PV1ES‘_J RETURNING MATERIALS: P1ace in book drop to LJBRAfiJES remove this checkout from -—_. your record. FINES wm be charged if book is returned after the date stamped below. IEXIENT‘TUVWHICH.FEHBLE OFFSPRING EXPOSED'TO IHEHIHISEILEESTRDL.(I§§) IN UTERD RECEIVE DES‘TASKIFCRCE HD3IMMHNHED’HEAIEH[CARE By Imise A. Pomtkmski A.THESIS swindtted.to Michigan State University in partial fulfillment of the remixements for the degree of IMBSTER.OF'SCIENCE IN NURSING College of Nmsixg 1988 Copyright by ICUISE‘ANN’POINTRDWSKI 1988 W mmmmmommmmm DIEIHYISI‘IIEESIRDL (113) INUI'ERORECEIVE ‘WWWWQRE By ImiseA. Pointkowski Diethylstflbestrol (S) , a drug previously given to prevent miscarriages, has since proven to have a strong teratogenic potential am to have left nany who were exposed in utero with physiological ahnrmalities. A descriptive sttfly was conducted to identify the extarttovhidm‘danghtersreoeivedthehealthcamreoamerdedby theFederalGavenment’sIETaskForce. Datawerecollectedbymeans of a self-ministered questiamaire from 670 DES daughters aged 16 to 40whohe1cngedto‘Actimarflsubscribedtotheirquarterly newsletter, W. A questionnaire was developed for the pnposeofthisstudyarflbasedupmtheguidelines setbythe 1985 “Task‘i‘orceinreferenoetoreoaunerdedhealthcareforDES daughters. mta were analyzed usirg descriptive statistics. There is a significant deficit in the extent to which DES daughters received the health care reocmnended by the FederalGovernment's DES Task Force. Further research needs to be undertaken to explain underlying causes for this deficit. —._..—__._.u ~.,..- tomYnntherand mysister,m1y, whoareIISexposed. iv Asirnexetharflcywisexterdedtomytlmisoamnitteemembers, Barbara Given, Chairpersm, SandraI-Iayes, Patty Peek, andJoanne Pohl. Iwcmld alsoliketoreoogrfizethemrkardpatierneofuanfred Stamel. 'Ihereanenowordstoexpressmygratitudetomyfamilyfortheir facilitated the cmpletion of this mrk. 'Do everyone who; in any way, cartribtrted toward helping me attain myeducationalgoalsIextendaveryspecial'IHANIG! Asimeretkmflcymisexterfledtomytkmiscmmitteembezs, BarbaraGiven, (hairpersm, SandraHayes, Patty Peek, andJoanne Pohl. IwouldalsoliketorecognizetheworkanipatienceofManfred Stannel. 'Iherearenowordstoexpressmygratitudetomyfamilyfortheir patiermardmxderstarding. 'meirencmragatentandassistance facilitated the cmpletim of this work. To everyone who} in anyway, cartributed toward helping me attain myeducationalgoalslexterdavexyspecial'nm! WOFGNIENTS StatementofPrdolan... ChueptualDefihitiama. DESDaughter.... Reoannendedfiealth Gare. mutiGBOOIOOOOOO Overview of Proposed Research QIAPI'ERII-CINCEPIIELFRAMM Oran'sSelf-Care'meory.... .............. 13 ‘meoreticanrame‘mrk..... Sunmary.... ...... . ............... 23 vi ............. 18 vii Page MEI-WOFIW Overview............... ........... 24 Earlystudies............ ........... 24 ‘AdenosisaESAMijectW ...... 27 IISTaskForceW ........... . 33 IIS'I'askForceReomneniedHealth Carefor‘Daughters...... ............. 35 HealthBehavior......... ............. 42 BreastSelf-Ehtamimtion .................. 43 Papanicolaouanear........... .......... 46 Sunlnary of Reviav of literature . ............. 48 amm-mnoommm Overviev............ .............. 49 mta Collection Procedure . . . .............. 49 Population and Sanple. . ............... 51 DataHardling......... ............ 54 (perational Definitions. . . . . . ............ 54 Wmmmm ..... 54 Initiation of Periodic Screening Eaminations ..... 55 ScreeningProoemresW ........... 55 EbcaminatimSchedule........... ...... 55 Indication for More Freqsart Damimtions ....... 56 UseofColposcopy............. ...... 56 UseofBiopsies.......... .......... 56 Breast Examination . viii Page 0 O O 0000000000000 56 Modifying Factors ................... 57 Reliability and Validity. AnalysisofData. . . . . Protectial of Humn Rights. WOOOOCOOOOOCOOO 000000000000 60 ammv-mmmesmmlmmmsxs 0 O O O O ........... 57 O O OOOOOOOOOOOOOO 59 O O O 0000000000000 59 Overviar............. ............. 61 Subquestions............ ......... 62 Descriptive Findings of the Study Sanple .......... 63 Sociodamgraphic Variables . . . . .......... 63 SlmzyofSociodanographicVariables......... 66 ExtraneousVariables...... ........... 68 DatanesentatimforRaseardeuestim arriSubquestions........... ........... 68 Subquestim 1. albquestim 2. Subquestion 3. Whim 4. O O O O O ........... 68 0000000000000000 72 ......O.... ....... 77 SmmnaxyofneseardlwtimandSubquestiors ..... 84 Sunlnary ....... ............... 85 Page GIAPIER VI - W, W106, ANDWIQB Overviev............... ........... 86 ReviavofPreviousclapters....... ........ . 86 Sunmry and Interpretatial of Findings. .......... 87 Sociodanographic Characteristics oftheStudySanple....... ........... 87 EctranemsVariables....... .......... 91 ReseardeuestimardSubquestions .......... 91 Interpretation of Group Subquestions ......... 99 AdditionalFiniings....... .......... . 106 Iimitationsofthesuldy....... ........... 108 InplicatiomforNursing....... ..... 110 Inplications for Nursing Practice ........... 110 Inplicntions for Nursing Education ......... . 121 RecmlnendationsformtureRQseardl.......... 123 Replication of Study . . .............. 123 FutureneseardlAreas................128 WOOOOOOOOOOOOO 0000000000000 131 APPENDIXA-1985IES'1‘askForceReomuendations ScreeningIISDaughters...” ......... 132 mma-mommomL-mou ANDCIXJNSEIIPBOFW... ......... 134 MDIXC-PIIDI‘S'IUDYQJESTIQINAIRE.............139 APPENDIXD-INSIRJMENI‘........ ............. 143 9 Page WE-OPERATICNALIEFINITIOBOFWDED mm.................... 147 I. Initiatial of Peflodic Screening Eaminations . . . . 147 II...ScreeningProcedures...... ......... 147 III.EcaminatialSdledule.................148 IV. Irdicatias for line Freqlent Eammatias. ..... 148 v.Useofo:>1posccpy............. ..... 148 VI.UseofBiopsies............ ..... .. 149 VII............BreastEbcaminatias ..... .150 BackgmmdData......................150 APPENDDKF-APPKJVALIEI‘MMUGIDB............ 152 APPENDIXG-REIEVANI‘SIWQBBYGRIJP........... 153 WUH-WTSOFx-mm CNCUESTICNNAIRE........... ...... .155 W O O O O O O O O O O O O O O O O O O O O O O O O O O O 166 Table 10 11 IIS'I‘OFTABUES Nunber and mrcentage of Participants byAge(n=668)......... ....... NlmberandPercentageofParticipants byYearsofEducatial (n=670).... ....... . NtmberardPercaltageofParticipants byHarital Stains (n=670). . . . . ...... Number and Percentage of Participants by Yearly Family Insane (n = 653) ........ Number and Percentage of Participants by State of Residence (n = 670) ......... NunberarriPercentageofParticipants byMamerinmidlInformedof‘ Eb:posure(n=670) . . . . ........... Nunber and Percartage of Participants by Pregnancy of Pelvic Elvcalnimtias at IE Screening Examinatias (n = 627) . ..... NtmberandPercentageofParticipants byFrequencyofPapSnsarsat‘ Screening Ebcaluinatias (n = 638) ........ NtmberardPercentageofParticipants byFrequiencyorodineStainingsatDES Screening Emimtias (n = 583) ........ NunberandPercentagebyReasalfor SeeingI-IealthcarerviderMore'Ihan Oncanear(n=508). . . . .......... Nunber and Percentage of Participants byAgeWhenlhnmgr-aplywasPerfomed ...... Page 63 64 65 65 67 70 70 71 73 75 IISTOF'IREIES Table Page 1 timber and Percentage of Participants w m (n = 6“) O O O O O O O O O 0000000000 63 2 Ntmber and Percentage of Participants by Years of Educatial (n = 670) ............ 64 3 Nunber and Pacertage of Participants by Darital Status (n -= 670). . ............ 65 4 timber and Percentage of Participants by Yearly Family Incas (n = 653) ........... 65 5 Nunber and W of Participants by State of Residence (11 = 670) ............ 67 6 NtmberarriPercentageofParticipants bymmlerinmidllnfonsdoffi Ebrposure(n=670).... .............. 68 7 Number and Percentage of Participants by Frequency of Pelvic Examinatias at [EB Screening Examinations (n = 627) ......... 70 8 NLmberarriPercentageofParticipants byFrequencyofPapanearsatw Screening Ebzaminatias (n = 638) ........... 70 9 NtmberardPercentageofParticipants byFrequiencyorodiJsStainingsatII‘S ScreeningEhaminatias(n=583) ........... 71 10 NtmberarriPercentagebyReasmfor Seeingl-Iealthmrervidermre'Ihan alcanear(n-=508).... ............. 73 11 NmtberandPercentageofParticipants byAger'lenMalmograplymsPerfomled ......... 75 Table 13 14 16 17 18 19 20 21 Nunberand'PercentagebyReasalfor Manmgraplymm...” ....... NtmberardPercentageofGrpupl ParticipantsbyExtentofReoamlerfled HealthChreMet(n=17) . . ......... NmberandPercaltageofGroupz Participantsbyixtentofneoamsnded HealthCareMet(n=2). . . . . ....... NmrberaniPercentageoferpB Participantsbyibctartofaeccmnended HealthCareMet(n--22) . .......... NmtberaniPercentageofGrapll ParticipantsbyEbctentofRecaunerried HealthCaremt (n=25) ........... NunberarriPercentageofGrulps ParticipantsbthctentofRecamsrded HealthCareMet(n=95) ........... leberandPercentageomeupé ParticipantsbyErtartofRecmnended HealthC‘areMet(n=30) . . . . ....... MmberardPeroaltagaeofGralp7 ParticipantsbyEbctartofRecamerfled HealthCareMet(n=113). . . . . ...... NtmberardPercentageoferpe ParticipantsbyEbctentofReoamlerrled HealthCareMet (n=199). . ......... NmberardPercentageof‘Daughters intheSUldybyEbctattoflbcaunerded HealthCareMet(n-=503). . . . ....... Page 76 78 79 79 80 81 81 82 83 84 Figm'e xiii LISTOF FIGJRES Self-Care Caloept for [ES-Exposed Fanale Offspring. . . ................ Page 17 CHAPTER I DEM—ml me mltitude of technological an: scialtific advances has escalated in the twentieth century. Unfortunately, at times advances havetakenplacetoorapidlyandresearchhasnotbeenadequately capleted, later realltirr; in disastrous discoveries. One alch misforume is the plysiological effect on offspring whose mothers were exposed to Diethylstilbestrpl (3) during pregnancy. m Diethylstilbestr'ol, the scientific rams for ‘, is a legal prescriptialcmpanflthatwasgivenbyplysicialswiththebestof intentiastomillias ofAnsricnnvmenformrethanthirtyyears in the debatable belief that it would prevent miscarriages (Meyers, 1983). Swasmtallyprescribedforpregmntminthemited States but other countries as well, imluding Australia, France, Israel, Mexico, Spain, Belgium, West Germany, Italy, the Netherlands, England, the Philimines, and many, if not all, the South American countries (Oraterg, 1981). S, a synthetic rasteroidal estrogen, was first synthesized in1938. nuasappmvedbyuaerbodammugministratim (mt) in1941 foruseinvarious estrcgal-relateddisordersduringandafter nlerrpatse. Six years later, in 1947, during the height of the baby born, itmsamravedforuseduringpregnancytoprevent miscarriages. "Doctors thought that ms, taken during pregnancy, would pramt miscarriages, especially if the m had had a previous 1 CHAPTER I m me nultitude of technological and scientific advances has escalatedintheuoentiethcentury. Unfortunately, attimesadvances havetakenplacetoorapidlyaniresearchhasmtbeenadequately cmpleted, laterresultingindisastrasdiscoveries. mesuch misfortune is the physiological effect a: offspring whose mothers were exposed to Diethylstilbestrpl (‘) during pregnancy. DEM Diethylstilbestrol, the scientific name for S, is a legal prescriptialcarpamthatwasgivenbyplysiciarswiththebestof intentiastomillias ofAmericanvmenforncrethanthirtyyears in the debatable belief that it would prevent miscarriages (Meyers, 1983). Swasmtmlyprescribedforpregnantwmsninthemited States but other countries as well, incluiing Australia, Frarce, Israel, Mexico, Spain, Belgium, West Germany, Italy, the Netherlands, England, the Philirpines, and many, if not all, the South Aueriaan countries (Ora-berg, 1981). us, a synthetic nasteroidal estrogen, was first synthesized in1938. ‘wasamrcvedbythel‘bodaniDrugAdministratim (F114) in 1941 foruse invarious estrogal-relateddisordersduringarrlafter nsncpanse. Six years later, in 1947, during the height of the baby born, itwasarpravedfortsemrrirgpregnancytoprevent miscarriages. "Doctors thaght that DES, taloen during pregnancy, wmld prevent miscarriages, especially if the wunan had had a previous 1 2 miscarriage, orhadslignt bleedingordiabetes" (3 Action Natialal, 1933, p. 2). 'mesewoumreceivedmisdmgmdernanydifferent brandmmesaspills, injectias, orvaginal suppositories. In 1971, m—typedmgswerebamedinthemitedStatesbymemcoruse dirirgpregnarsyafteranedicnlreportvasplblistsdlinking‘arfi vaginalcamerindatghtersexposedinutero. 'JheFDAwithdrewits amrcvalfor‘useduringpregmmmardpregnancyusewasthen listed mfier the "Cartraindicatias" sectim of descriptive drug informatial (IByers, 1983, p. 87). 'meactiasanilsesof‘asdefinedbyccvaliandnayes (1985) states: MasandUses: Reportedlythencstpotentnasteroidal syntheticestrogenccnpound. Hasstragteratogenicpotential; may cause vaginal or cervin cancer in offspring if mother is treated with diethylstilbestrol durirq pregnamy. Interferes with inplantation of fertilized ovum in utens by unclear Martian; doesnot terminate pregnancy. alppresseslactatim. Emessive or prolalged use may inhibit anterior pituitary secretions... Ifthepatientmlohasbeentakin; diethylstilbestrol beamspregnaht, she shdndbe informed of the teratogenic potential of this drug. (pp. 425-426) "Anymotherwhosedlildrenmrebomduringthethirtyyearsin whichthis dmgwaswidely prescribed, andwho received medication dimingthefirstfivenrmtlsofherpregnarsy,neytsvebeengiven 3. Sheardherchildrenmaybe“ exposed” (mas ActionNational, 1983,p. 2). 3 lme“storyisanever-evolvingstorywhosechelnicralilrpacton thewcnsnwhotookit,thedlildrentheybore,arrievenaltheir grarfldlildral,growswithtime(lhyers,1983). Inasnnchastheoldest mamosedto‘-typedngsbefaebirtharejtstmrning40years ofage,thereisapossibilityctherproblensmaybeermmteredas thesewunengrowolder. ‘nlepmblanismtfading,butbecaningmore prcninart. "...nesvproblals,irsludingasecaripeakimiderseof invasiveclearcellgancerinIISdaughters,mightoowrastls S—exposed pqnlatialgrcwsolder ..." (Graham, 1981, p. 127). Therefore, effectivemears tomalitor this pqnlatial needs to be maintained. Musesneedtobeabletodealwifllthisepidenic. "Althamaleacmalnmberofmnwhoreceived‘inthe United States behaeen 1940 and 1971 is not lmown, it is variously estimated at between 500,000 and three million" (Orenberg, 1981, p. 36). "Estinates, based almrketirg 1959-1965, indicate that fran UntcthreemillialAmeriganmreceivededurirgpregmmy realltinginelmosureofbeulealbdoandthreemillialsasor daughters" (Hollies, Hoskins, &Gross, 1981, p. 30). "At least 3percentofthenatim'swrraltpqnlatialwasexposedduring pregnancytoanavandapparentlymiraallasdmgthatbytoday's starriardshadn'tbeensufficiently tested" (Meyers, 1983, p. 13). measapprcvedforuseinlnmrsbytheminmfl, few criteriaeadstedfor juigirgnardrugs. In1962,anawcnlgressialal drug regulation law required mrnfacturers to prove effectiveness as wellassafety. 'Ihismeantabelatedre-evaluatial for‘mrerberg, 1981) . 4 A University of Chicago study, published in 1953, revealed that ‘wasrselessinpreventingmiscarriages:tnvever,thefldidmt questiaxthednrgfornearlythreedecadesafteritsinitial m1. Earlyin1971,I-Ierbstarrihiscolleaguesgaveprooftonr. Charles Etiwards, thalcamlissialer ofthe FDA, that given during pregnancycmldmuseaarnerinthefanaleoffspring. 'IhanAwas slavtoactevenafterthisevidersewaspresented(0rerberg,1981). A1971artic1elirfldng‘anivagiralcancercreatedagreat panicinmilliasofAmericanmthersanddatghtersexposedtofi. ”'nlatpanicsubsidedtothelevelofamrietyasresearchersdetemirsd thattherateofvaginal/cervicnlgarserindeaugntersism greaterthan1.4in1,000,arrithatthediseasehasbealdiagnosedso farinroughly 400 wrnen" (Meyers, 1983, p. 20). 'Ihisanxiety will cmtimetoeldstandneedstobedealtwithbyhealthcare pmviders. 'nlereisthecalcernthatas‘daugntersreadlnenopause theymybeatanixsreasedriskforclearcelladenocnrcirnna. AIIS datrgnter,hhethersheisateenageroranarriedwman,mstlivewith that possibility fortherestofherlife. ‘hasbeendescribed byOrerberg(1981) as, "...adrugthatcalldcrosstheplacentato readlthefeusarrithencalseserimsdiseasetuntothreedecades afterexposure" (p. 36). ”...‘hadgalefrunbeirgamiracle drug to the world's first transplacental carcinogen" (Meyers, 1983, p.19). W 'nle discovery of possible alteratias in health not only cause greatcalcemtotheoffspringwhowereexposedto‘inuterobutto nethersinthehealthcaredeliverysystenaswell. 'Ihealteratias 5 in rhysiological functialim as well as psychological areas of concern r'qlresartative oftheS-exposed popllatimmstbeaddressed. Thus, thegdestimbeingaddressedis: 'lbdlatextertm‘darjrters remiveflstsalfilcarerea-amdbythemmrt's‘ MM? W 1. 3. Forthcse‘dmlgntersmoweretoldoftheirexpoalreduring pretty, areperiodicscreeningexaminatiasbeingdale begimimatageuorattheasetofmases (whicheveris earlier)? Are daughters receiving the appropriate screening procedu'eateaduexaminatialwhidiminimlly incluiesa thorcugh pelvic examination lsirg palpatial, cytology test, ardtissueinspectial imludingtheuseofale-halfstrength aqueous Ilgol's solutim for cervical and vaginal staining? Are‘danghtersbeimexamirsdatleastalceayear? Aremrefrequentacamimtiasbeingdaleformwith extasive atypical epithelial changes? Is colposcopy being utilized in: a. allcasesvmereahlormlcytology (Papsmear) isobserved? b. cases of extersive or widespread epithelial d'langes (such as, W metaplasia)? c. the initial examinatial (for baseline data)? Are biopsies being performed only: a. when indicated by abrmml Pap tests? b. when there is other evidence of significant epithelial ahlormalities? 6 7. Arebreastexaminatiasof‘daugntersbeimperformed accordirqtothealrrentNatialalCarcerIrstitute (NCI) guidelinesregardirqthefrequencyofscreafirqexamimtias? m 'nlisreseardlsunywillfoalsmthefanaleoffsprilgexposedto “materparddisclosewrrarthealthpracticesutilizedbythis populatimspeoiricinmaitoringthepotentineffectsofm Wmutero. 'Illeminobjectiveoftllisreseardlistoacqflre an acwrate descriptial of the characteristics of fanale offspring aposedto‘inutero,ardtodescribethepatternardtypeof Inalthcarereceived. Itisl'xpedthatthiswillstimlatefurther interestarrireseardlintheS-exposedfalalepopalatim. 'Ihe infcmtialgairsdinthisstudyiseutralslyinportantinlayingthe famdatimforfm‘therresearrhmidlnaypravidethensarswhidl mldallowmenbersinthehealmcaredeliverysystentomre effectively direct and individualize care for this population. 'nle ultimtegoaloffurtherreseardlgeneratedbythisstlnyistoarply sciartifically documented lmowledge to inprove the effectiveness of healthcaredelivered, sothatthe careprcvidedto clientele will havethegreatestinpact. miryintouaeproblemproposedlendsitselftomrsing researdlersapotentialtoyieldnewlamledgeformrsingpractice and specific clinical focus. This relatively new and ever-firmeasing issueisfertilegromflthathasthepotentialtobealltivatedto generate a scientific basis for mrsing practice. Information about thehealthcnrereceivedbyIISdaugnterswulldfacilitatermrsin; 7 assesmrt,plan,arriinterventials. Frunthissuriy,hypothesescan befornllatedanifm'thermdlavenlesidentified. 'Iheaimof thisshriyistosurveythe‘falalepqmlatimregardinghealth carereceivedspecifictotheirexposureto‘. Bydatainirlganacalratedescriptialofhealthgarereceivedby thefelaleexposedto‘inutero,potentialdeficitsinthe recmmfledhealthcareprescribedbythe‘hskf‘orcenaybe disclosed. mas,fm-uaerresearohom1dhemaertakmtoeq>lain mflerlyirgcausesforthisdeficitsothatattentialaanbefoasedin theseareas. mlowirgwhidlfactorsprevartpersasfrunobtainingan altimllevelofprevartativehealthcarecmldassistmrsesin fluartirgthedevelqmartoftlsseinfluerms,orinfirflihgsolutias tocomteracttheeffeotsoralreadydevelopedractors. Franthis research, develqnsnt of strategies that provide effective mrsirg caretothishigh-riskgrulpcmldbefomllated. 'n'ms,theartcane ofthissuriylaysthefalrdatialthatisneededtoproceedtoa higherlevelofinauiry. W Fruntheprecedingdefinitionsarddescriptiasof‘,the definitialof‘daugnterisderived. 'Ihecalcept-mxfltersis definedinthisstudyasthefalaleoffspringcaneivedbetween 1947-1971mowereexposedforamlaqthoftineto‘inuterp. In avastnmerofcases,prpofofexposuretomsisnctdotainableto the‘daugntersduetofaultyordestrcyednsdicalrecords,ad/or irability of their mthers to recall or elicit this information. W 'Bs‘lhskmisagrmpof scientific, medical, govenmrtal, andcasmercasultantscawersdatthebehestof Joseph Califano, thenSecretaryoftheDepartmentof Health, Ekiucatial ardWelfare (II-EV), and inplanentedby Dr. Julius Ridmrni, angeal-GaleraloftheUnitedStatesin1978, toreviavallaspectsof the‘prdolan,naldmrecannendatias forhealthcareofthe exposed, ard researchdirectias for medical investigators. Wheelfllcareisthescrealingpr'ocemneam examinatimguidelinesadvocatedbythe‘laskrbrcefordatghters exposedto‘inutemweeAppenfixA). 'Ihegynecologicexaminatial ofalE-exposedfanaleissimilarto,hrtmoredetailedthan,a rartine pelvic enraminatial. 'lhe cmpasnts of the gynecologic amimtimformlmedto‘inuterpirsllfle: vaginaland cavical palpation (digital), bimanual (recto-vaginal) examination vaginal ard cervical inspectial (speculum), cytology (separate slide ofvaginal forniess andcervix), colposccpy (optimal), iodine staining of cervix arrivagina, biopsy of atypin findings, andbreast examiratial(seeArpaldixB). M13 1. [IS-relateddlangesmaynotshavupaltheuslalpelvic elminatialorPapsmearsper-formedbyncsthealthcare praviders:scmsqlecialproceduresmstbeused. 2- 'nlefalaleoffspringexposedto‘inuteroreanesspecial healthcare. 10. 9 'nlehealthmreguidelimsreoamfledbythef'ederal Summit's‘TasRForceareavailabletoallhealthcare prcviders. Healthcareprcviders,aswellas‘-exposedclients,have optiasindloosirqwhidlavailablehealthmreresmrmswillbe Used. The physiological atnonlalities reallting fran intrauterine Wm‘myresultintheimbilitytobeardlildral. 'nletotaleffectof‘mther'epr'omctivetractofm exposedinutermastheyadvancethmghthechildbearingani intotheperinmapausalyears, isunlmown. The lag-term serpelae of health-related risk factors of those falalesacposedto‘inuterpmfltheiroffsprirgareasyet mtccnpletelylmown. neimpactofacpoalretomsihuteroisasignificanthealth prdalan. merearemanywanenwhodomtkncwthattheywereemposedto “inutero. Aniniividual'shealth practicehasasignificant inpactmale's averallandlong-termhealth. Emigrants 'nlesanpleforthisstlriyismadeupofvolmrtaryparticipants frun‘Actial. ‘nlissanplenayrepresentagrwpbiasedtmard seeldmcare. This, thereisapossibility thatthesanple for thissbxlynaydifferintheextenttomidlitcanbesaidto representthepopulatial. £7 10 2. mmledoesmtimludethosem-euposedreualesanare wawareoftheirexposureto‘inutero. 3. mitaltoftheself-reportalrveyisessentiallylimitedbythe extarttowhidirespaflartsarewfllingtoreportalthetopic. 4. 'nleresearcherwillnotbepresaltatthetimethequestian'aire iscamletedtoarswerqrestiasthatnayarise. 5. msparlentsdifferintheirreadinglevels,inlomletheof radical terminology, and intheirabilitytocammnialte in writirq. 6. miledqsstialnairesarelmowntohaveagenerallylowrespase rate. . 7. 'nlealrveydatacollectedinthissuldywillmtpermitthe researdler to infer calse-and-effect relationships. Milanese-1m Incapterl,thebadcgrunriarristatalsntoftheresearch prdolauwasintroducedalagwithastatanentofthepurposearrl inportanoeofthesuldy. Canepblaldefinitias, assunptias, and limitatials of the studywere alsopresented. Indapter2,thecalceptualframeworkupmwhidlthissmdyis wided,najorcalceptsinthestudy,arrirelatiashipofthecmcepts usedwithintheframaaorkwillbedjsalssed. InChapter3,areviarof literatnlrewillbepresentedirclusive oftheresultsofearlystuiiesrelatedtotheuseofm;the inceptimardsuriyreslltsofthemSAdenosis(lISAD)Project; thialoftheTaskFome;s.lbseq.laltestablistmentofthemS TaskForcerecamendedhealthgare,withreferersetorecamsrdatias nadebyreseardlersotherthanmalbersofthe‘TaskForcein 11 relatimtcnecessaryscreafingardnanagamntof‘daughters;and health behaviors of wanen in relatial to breast self-examination ($E) arriPapanicolaal (Pap) mar. Incapter4,thereseardidesignarrimethodsusedtoguidethis sudywill be precarted. The data collectial procedure, populatial, selection of the sanple, operaticnal definitias, scoring, reliability andvalidity, analysis of data, andprotection ofhuman rights will be described. Indiapters, datapresartatialarflaralysisofreseardlresults willbepresalted. Tableswillbeusedtoillustratetherealltsof tindata. Inclapter6, thembstantiveandtheoreticalcartrihrtiasof thesunyarrirecanneniatiasforfilrtherreseardlwillbepresented. CHAPTER II sate—mm theirhealth. Itistheywhonakethedecisialofvmetherormtto seekhealthcareand‘oouplytothestrixgentsdieduleorthe prqlhylacticexamiratias. Forthosewhoareasynptanatic,itiseasy farthantobecanelaxinpostpmimtheireverbsoinportant reqrirenartforscreening. 'Ibcthers,thefearofthemlkrmnkeeps thanaaay. ‘daughterswiththeirmltiuneofproblalsmlsttake respasibility for seeking care. They couldbecanevictims of health care neglect by falling through the ”cradcs" of the health care systen. "Healthistherespasibilityofatotalsocietyardall of itsnarbers. 'nlensetimofhealthneedsreqfiresnanyhealthroles ard shared or fluctuating responsibilities" (Fitzpatrick & Niall, 1983,p. 139). Mitersexposedto‘inuteroustbecmstheir ownself-careagent.‘ Viadrgthe‘datghterasherownself-careagentisacritical culpalartfrunmichafransdorkormodelcanbeinplmrtedor derivedtodirectherhealthaire. DorcthyOranhasconstructeda canepulalframauorkhlildingupaltheccnceptofself-care. Theirs daughters'healthgarecanbeguidedbyutilizingOran’sself-care nodal. AnaverviewofOrem’sself-garetheorywillbepresented. This werviavwillirsludeadescriptimofthecalcqmalfransworkfran whichher theory is derived, a definition of person, awirarnent, 12 CHAPTER II amiss 'nle‘dalghtersareinessasethegatekeeperstomaintaining theirhealth. Itisthsyvhomakethedecisimofwhetherornotto seekhealthcazeand‘omplytothestrirgmtsdieduleofuie prqhylacticexaminatias. Forthosewhoareasynptalatic,itiseasy forthantobecanelaxinpostpalirgtheireverbsoinportant remiranentforscreening. 'Ibothers,thefearofthemknownkeeps thanaway. IISdaughterswiththeirmltitirieofprrblalsmsttake respasibility for seeking care. ‘Ihey could becane victins of health careneglectbyfallirgthmlghthe"cracks"ofthehealthmre system ”Healthistherespasibilityofatctalsocietyardall of itsmalbers. 'memeetimofhealthneedsrequiresmanyhealthrples am shared or fluctuating resqnnsibilities" ( Fitzpatrick & Mall, 1983,p. 139). Daughtersexposedtomsinuteromstbeoouetheir mmself-careagent.‘ Viavirgthe‘daughterasherownself—careagentisacritical cmpasntfrmwhidiaframsmrkormdelcanbeinplementedor derivedtodirectherhealthcare. DorothyOranhascastructeda canepulalframnrkbuildingupalthecalceptofself-care. The“ dalgbters' healthcarecanbeguidedbyutilizing Orem’s self-care model. AncverviavofOren’sself—caretheorywillbepresented. 'Ihis overviavwillimluieadescriptialoftlscasepumframsworkfm whidlhertheory is derived, adefinition of persal, envirament, 12 13 health, ammnsingtheoryofgoalattairwrt. lastly, the inplicatim of the study variables will be presented. WM Oren's self-care theory incorporates hunankini as a self-care agent. "Self-care nay be sinply defined as activities a person initiatesarrlperforllsalhisownbehalf inordertonaintainlife, health, and well-being" (Anna, Christensen, Halal, 0rd, & Wells, 1978, p. 8). Oran (1985) states, ”In the tem self-care, the word self is usedintheserseofale'swholebeing. Self-camcnrriesthedual canntatim of ‘for asself’ am ‘given by asself’. The provider of self-care is referredtoas self-care spit” (p. 84). daughters is used synonymsly with faiale offspring, client, and self-care agart. Itisthispurposiveagentthatiscapableofgoal—directed activity arr! possessing decisial-nakihg capabilities. The behaviors thattheself-mreagentengagesin, likethe‘daughters, arein theformofdeliberateactial. 'mecoreofOren'sfililosofllyisthe belief that we have an innate ability to care for ourselves. Accordingtothismodel, nature individualshavethecapacityto actaltheirownbehalftomeettheirlnlalrequirelentsfor self-care. The individual’s abilities or potartials mist thereforebetarpedorsqplanentedtotakettsactialnecessary to 1.) ape with the effects of illness, 2.) make adjlstments in lifestyle, and 3.) mdify either behavior, the situatim, or both when changes occur in the individual's health state. (barten, 1978, pp. 9-10) 'meplrposestobeattainedthmlghthekinlsofactiastermed self-care are named self-tare reqrisites. 'Ihree types of self-care 14 reqrisites are identified: universal, develqmartal, and health-deviatial. ‘Ihey rest on the following assmptials: 1. Hmnbeings, bynamre, haveccnmalneedsforthe intake of naterials (air, water, foods) am for bringing about arri naintainin; living calditias that surport life processes, the futialandnaintenanceofstruchlral integrity, andthe naintalance and prunotial of functiaal integrity. 2. amen develqlnnt, fran the initial period of intrauterine life to the fullness of adult naulration, require thef‘tialardthenaintenancecfcaditiasthatpranote knom develqmaltal processes at each period of life cycle. 3. Genetic and castitutional defect and deviatias fran normlstrucmralardfmlctialal integrityarrivell—beingbrirg aboutrequiranents for (a) theirpreventimand (b) regulatory actialtocaitroltheirextasialarritocartrolandmitigate their effects. (Oren, 1985, p. 86) Oren (1985) described the persal as a "unity that can be viewed as functicning biologically, synboliaally, and socially" (p. 175) . She focused m the persal's ability to perform self-care, which is defined as "the practice of activities that individuals initiate and perfommtheirownbehalfinnaintaininglife, health, and hell-being" (p. 84). Oran interrelated lumen beings and envirrnnent. Oran (1985) stated, "Requisites for self-care have their origirs in human beings and their enviramatts" (p. 36) . A clear definition of (swim-ant wasnctdevelopedbyOran. Developmental atvirormentl'lmeverwas described in detail. Such an envirament "prmstes persalal 15 develmrtinrelatimtobeoaningabletomeetpresentorfuture demards for acticn" (Oran, 1985, p. 138). A develqnental envirament casists of "alviramental cariitiasthatmtivatethepersalbeirg helped to establish amropriate goals arri adjlst belavior to achieve resultsspeoifiedbythegoals. . . . Itisthetotalenvirrnnent, not any single part of it, that makes it develqna'ttal" (Oren, 1985, pp. 140—141). Oran (1985) defined 1331111 as the ”state of wholeness or integrityoftulanbeings." PersasaresaidtobehealthyWhenthey are structurally and functialally wl‘nle or sourd" (p. 173). That is tosaythattl'sydonothaveanysigrsofdiseaseormrbidityarfl possessfullvigorardstragth. "Herdefinitialofhealth includes the capacity to live as a human being within ale's physical, biologic, ardsocial emiralnentsandadlievesaneneamreofhis/herpctaltial" (Fitzpatrick 5. wall, 1983, p. 139). Physical, psychological, interpersaal, andsocialaspectsofhealthare, accordirgtoOran, inseparable. Health, than, mistincltflethatwhidlnakesapersalmman (form of mrtal life), operating in caljunctial with physiological and psydsphysiologiml medianisls ad a material strucmre (biologic life) arriinrelatimtocoeldstencewithcthermmanbeirgs (interpersaal and social life). (Oren, 1985, p. 174) Oren (1985) casidered musing to be a helping service, "a creativeeffortofalemmnbeingtotslpamthermnnanbeirg" (p. 132). The special cancer-n of nursing is "the imividual's need forself-careac‘tialandtheprovisialardnanagew'rtof itma cartinnsbasisinordertosrstainlifeanihealth, recoverfran 6 7. Arebreasterminatiasof‘daughtersbeingperformd aooozdimtoflnamrtflatiaalchnoermtimte (NCI) guidelineszegamingthefreqmcyofscmaiingexamixmtims? m misreseardistniywillfowsonthefenaleoffspringexposedto ‘inuteroarddisclosemaithealthpractioesutilizedbythis populatim specific in mitorirg the potential effects of expoaneinutem. 'lhenaindajectiveofthisreseardiistoaoquixe an aoanate description of the characteristics of famle offspring exposedto‘inutero,andtodescribethepattexnardtypeof healthcarereoeived. Itislmedthatthiswillstimlatefurther hrterestardz'eseardaintheS-ecpoeedfemlepqnlatim. The informtimgainedinthissunyisatranelyinportantinlayingthe fandatimforfmflaerzesearmmidimayprwidetheneanswhidi waildallownmbersinthehealthcaredelivezysystantomre effectively direct and individualize care for this popilatim. 'Ihe ultimtegoaloffurtherzeseanhgenemtedbythisstmdyistoapply scientifically doamrted knowledge to inpxove the effectiveness of healthcaredelivered,sofl1atthecareprovidedtolfl3clientelewill havethegreatestinpact. Ingairyintouaeprobleapmposediausitseiftomrsing researdaeisapctentialtoyieldravlcmledgeformrsingpractioe and specific clinical focus. This relatively new am ever-irmeasing issueisfertilegrcunithathasthepotentialtobemltivatedto gamer-ate a scientific basis for rinsing practice. Information about thehealthcaxezeoeivedby‘daughtexswmld facilitatenursing 7 Wit,plan,arfiintexventims. Frunthissuny,hypcthesescan befomflatedamlfurtherneseardimxesidentified. 'Iheaimof thisstniyistosuzveythe‘fanalepqmlatimregardjnghealth carer'eoeivedspecifictotheirexpoanetoms. Bywtaininganaoairatedescriptimofhealthcanereoeivedby thefmleexposedto‘inutem,pctentialdeficitsinthe reommfledhealthcarepxescribedbythe‘TaskForoenaybe discloeai. m,furtherr$eaxdlcalldbemflertakentoexplain underlying causes for this deficit so that attention can be focused in theseareas. lowingwhidifactorspreventpersmsfranobtainingan cptimllevelofpzevamativehealthcareomldassistmrsesin ttmrtingthedevelopnmtoftheseinfluernes,orinfinfingsolutias tocamteracttheeffectsofalreadydevelcpedfactors. Franthis research, developna'rt of strategies that provide effective rmrsing oaretothishigh-riskgzuipowldbefonmlated. 'Ihus,theoutoane ofthisshfiylaysthefanfiatimthatisneededtoprooeedtoa higherlevelofirmiry. ; ! JLEinil' W Franthepreoedingdefinitions anddascriptims of S, the definitimoflI‘Sdaughterisderived. 'meomoept‘mis definedinthisstuiyasthefemaleoffspringomoeivedbetween 1947-197lmowereexposedforanylengthoftinetoflinutero. In avastnmberofcases,pxoofofexposuretomsismtd3tairableto the‘datghtexsduetofaultyordestroyednedioalreoords,axfl/or inability of their mothers to recall or elicit this information. W 'Ihe‘hskroroeisagmupof scientific, medical, gavenm'rtal, arfloastmroa‘mltantsomvenedatthebetmtof Josqh Califano, tl'mSecretaryoftheDepartnentof Health, Education andWelfare (ll-El), and inplenerrtedby Ir. Julius Richmnd, Wofflaethitedsmtainlgm, toreviewallaspectsof theIISptdalan,naJdngreoamendatimsforhealthcareofthe exposed, and rmeardidirections for medical investigators. mmmoareisthescremingprooedureand mmmtimguideiimsadeatedbymesmskpomefordaughtezs atpoeedto‘inuteroweelimafljxm. 'megyneoologicexamimtion ofalIS-exposedfanaleissimilarto,hrtmoxedetailedthan,a routine pelvic euaminatim. 'Ihe omponents of the gynecologic examimtimformexpoeedtomsinuteroixclude: vaginaland cervical palpatim (digital), binarual (recto-vaginal) mimtim, vaginal and cervical mspectim(spec.111m), cytology (separate slide ofvaginal fornioes andoezvix), oolposoopy (optical), iodine stainingof oervixandvagina, biopsy of atypical findings, andbreast examimtim (seeAppendixB). W 1. mS-mlateddiangesmaymtslmwmtheumalpelvic enmimtimorpapsmearsperformedbymsthealthcare providers:scmespecialprooeduresmistbeused. 2. 'mefaialeoffspringetposedto‘inuterorequimspecial healthcare. 3. 7. 10. 9 'mehealthcareguidelinesreoamadedbytheFederal W’s‘hskmammilabletoallhealmmre providers. Healthczreprovidets, aswellasS-exposedclients,have cptiasindnosingmidiavailablehealthcnmresmroeswillbe used. 'Ihe [hysiological atnornalities resulting fran intrauterine atpoalreto‘mayresultintheinabilitytobeardiildren. 'Ihetotaleffectof‘mtherepromlctivetractofwmen exposedinutem,astheyadvamethm@1thechildbearixgand intotheperimencpausalyeaxs, isunknown. 'Ihe lag-term seqaelae of realm-related risk factors of those fmlesaqaosedtominuteroardtheiroffqaringareasyet nctompletelykmwn. 'meinpactofexposm'eto‘inuteroisasignificanthealm pmblan. 'mereazemanymwhodomtlmwthattheywereexposedto Sinutero. An individual'shealth practioehasasignificant inpactonone's werallandlaigdtermhealth. I° .! !° lIhesanpleforthisstmdyisnadeupofvoluntaxyparticipants frunUAction. ‘Ihissanplenayrepresartagrwpbiasedtomrd seekingcare. 'lhus, thereisapossibility thatthesanple for thisshfiynaydifferintheextaattowhidiitmnbesaidto muepmllatim. 10 2. 'mesanpledoesmtimluiethoseS-exposedfenaleswhoare mmoftheiremosmeto‘inutem. 3. Woftheself-reportsmveyisessentiallylimitedbythe extaxttowhidxrespaflartsarewillirgtoreportmthetqaic. 4. 'Ihereseardierwillmtbepzeeentatthetinethequestiamaize isoamletedtoarswerqxestimsthatmyarise. 5. Wdifferintheirreadirglevels,inkrmledgeof nedical tenninology, and intheirabilityto ocmmnicate in writing. 6. miledquestiamairesarelcnwntohaveagenemllylowresponse rate. . 7. 'mesmveydataoollectedinthissuflywillmtpemitthe resealdiertoinfercause-ard-effectrelatimships. Incapterl,thebadcgmmdarflstatatentofthereseamh prcblanwasintzoduoedalagwithastatalentofthepirposeam inportanoeofthesuxiy. Omoeptualdefinitions, assunptions, and limitatia'softhestudywerealsopresented. Indnpter2,theomoepmalframeworkupmwhid1thissbxlyis guided, majorcmoeptsinthestuiy, andrelationshipoftheoonoepts usedwithinthefranavokaillbediswssed. InChapterB, areviavof liter-auirewillbepresentedimlusive oftheresultsofearlystuiiesrelatedtotheuseofmmthe incqatimardstuiyremlts ofthe‘Adenosis (MEAD) Project; fonatimofthe‘laskfbme;wbsequentestablislmrtofthems TaskFomoezeoamerdedhealthcare,wifl1referenoetoreommendatias nadebyreseardnersotherthanmenbersofthe‘TaskForoein 11 relatimtoreoessaryscreamgardnanaganentof‘datghters;axfi health behaviors of m in relatim to breast self-examinatim (ESE) ardPapanioolaou (Pap) mar. Indiapter4,ther$earchdesignardmethodsusedtoguidethis stuiywill bepresatted. ‘Ihe data oollectim procedure, population, selectim of the sample, cpsratimal definitions, scoring, reliability andvalidity, analysis of data, arri protectim of lumen rights will be described. InChapterS,datapresentatimarflanalysisofresearchresrflts willbepresented. Tableswillbeusedtoillustratetheresultsof thedata. Indupter6,thesubstantivearrltheoreticaloart:ributicnsof theshriyanireomnerdatiasformrtherreseardiwillbepresented. CHAPTER II m theirhealth. Itistheywhomakethedecisimofvhetherormtto seekhealthcnrearri'omplytothestringentsdieduleofthe prqhylacticexamimtims. Fbrthosewhoareasynptmntic,itiseasy forthantobeomelaxinpostpmingtheirever—soinportant regiirsmentforscremirg. 'Iocthers,thefearofthemflomnkeeps thanmvay.‘dmghterswiththeirm11titudeofpmblelsmsttake respasibility for seeking care. may could beocme victims of health careneglectbyfallingthra.ghthe"cracks"ofthehealthcare system. "Healthistherespa'sibilityofatotalsocietyarriall of itsnenbers. 'memeetingofhealthneedsrequiresmnyhealthroles and shared or fluctuating responsibilities" (Fitzpatrick & Niall, 1983,p. 139). mnghtersexposedto‘inuterommtbeometheir omself-careagent.‘ Viavirqthemdaugtrterashermnself-careagentisacritical ompamentfrunwhiduaframeuorkormdelcanbeinplementedor derivedtodirectherhealthcnre. DorothyOranhasca‘lstructeda canepmalframeuorkmildingupmtheoonoqatofself-oare. The“ daughters’healthcarecanbeguidedbyutilizingOran’sself-care nodal. Anoverviav of Oran’s self-care theory willbeprosented. 'Ihis overviavwillixcludeadescriptimoftheomoepmalfranmnrkfrun whidiher theory is derived, a definition of persm, environnerrt, 12 13 health, and rursing theory of goal attainnent. lastly, the inplioatim of the study variables will be presented. W Orem's self-care theory incorporates W as a self-care agent. "Self-care my be sinply defined as activities a persm initiatesardperformsmhisombehalfinordertomaintainlife, health, and well-being" (Anna, Christensen, Hohm, cm, 5. Wells, 1978, p. 8). Gran (1985) states, "In the tem self-care, the mrd self is usedinthesmseofane's‘molebeing. Self-caressrriesthednal mntatim of ‘for qeself’ arrl ‘givai by areself’. The provider of self-care is r'efer'redtoas alt-mm M” (p. 84). daughters is used syrrmynnrsly with falale offspring, client, arri self-mm agent. Itisthispxrposiveagentthatisoapableofgoal—directed activity and possessing decision-raking capabilities. The behaviors thattheself-careagentengagesin, likethe‘daughters, arein theformofdeliberateactim. 'meooreofOran'sphilosqhyisthe belief that we have an innate ability to care for ourselves. Accordjmtothismdel, nature irriivimalshavethecnpacityto actmtheirownbehalftomeettheirusaalreqairarentsfor self-care. The individual's abilities or We must fliereforebetarpedormpplanentedtotaketheactimneoessary to 1.) ocpe with the effects of illness, 2.) make adjustments in lifestyle, am 3.) mdify either behavior, the situation, or both manarqesooarrinflreimividual'shealthstate. (Marten, 1978, pp. 9-10) 'meplrposestobeattainedthroughthekinbofactionstermed self-care are named self-care requisites. 'Ihree types of self-care 14 requisites are ida'rtified: universal, develqnental, and health-deviatim. 'Ihey rest on the followilg assunptials: 1. I-nmnbeilgs, bynature, haveoammneedsforthe intake of mterials (air, water, foods) and for brirgirg about and mintaining livirg oafliticns that sugport life processes, thefoulatialarrlnaintenargeofstnlctural integrity, andthe maintalanoe and pruncticn of functional integrity. 2. Iiulnan develqnent, fun the initial period of intrauterine life to the fullness of adult naturation, requires the formatim and the mintenanoe of conditions that prawte known developla'rtal processes at each period of life cycle. 3. Genetic am constitutional defect and deviations fran nonal smnmralamfmctimal integrityandwell-beilgbrirg abartrteiranents for (a) theirpreventimand (b) regulatory actimtooontroltheireutersionaxfltooontrol andmitigate their effects. (Oran, 1985, p. 86) Oran (1985) described the parent: as a ”unity that can be viewed as amtiming biologically, synbolically, and socially" (p. 175) . She focused m the persal's ability to perform self-care, which is defined as "the practice of activities that iniividuals initiate and performmtheirownbehalf inmintainitglife, health, and well-berg" (p. 84). Oren interrelated hmnan beings and envirrntent. Oran (1985) stated, "Requisites for self-care have their origins in mmen beings am their envircnnarts" (p. 36) . A clear definition of swim-alt wasmtdevelopedbyOren. Developtental erwimmenthweverwas described in detail. Such an enviromlent "prunotes personal rn 14 realisites are idartified: universal, developmental, and health-deviatial. may rest a the follavirg asamptims: 1. Humanbeings, bynature, haveoaunmneedsforthe intake of materials (air, water, foocb) and for brixgilg abart and maintainitg living ocnditions that sugaort life processes, thefomtimarrinaintenanoeofstructural integrity, andthe maintenance and prawtim of functional integrity. 2. Inmndevelopnent, fratheinitial periodof intrauterine life to the fullness of adult maturation, requires thefoatialandthemintenarceofoariitionsthatpramte knom developnental processes at each period of life cycle. 3. caustic and constitutional defect and deviations fra nornal stmcun-alamfmctimal integrityandwell—beilgbrirg abartremirena'lts for (a) theirpreventicnand (b) regulatory actim to oartrol their extersim and to oonhml and mitigate their effects. (Ora, 1985, p. 86) Ora (1985) describedthepersalasa "tmitythatcanbeviewed as functialing biologically, synbolically, and socially" (p. 175) . She foalsed m the person's ability to perform self-care, which is defined as ”the practice of activities that individuals initiate and perfommtheirownbehalf inmaintaininglife, health, and well—being" (p. 84). Ora interrelated lumen beings and envirrnnent. Ora (1985) stated, "Requisites for self-care have their origins in human beirgs and their enviramats" (p. 36) . A clear definition of amino-art wasnctdevelqaedbyOra. Developmental awiramenthaaeverwas described in detail. Such an a‘Ivirornnent "prunotes personal 15 develqnentinrelatialtobeoanilgabletomeetpresentorfuture damrris for actial" (Ora, 1985, p. 138). A developmental envirament mists of "envirolmrtal ouriitimsthatmtivatethepersmbeirg helpedtoestablishamrcpriategoalsandadjustbelnviortoadlieve resultsspecifiedbythegoals. . . . Itisthetotalenvironment, not any single part of it, that rakes it develqmerrtal" (Ora, 1985, 1;). 140-141). Ora (1985) defined health as the "state of wholeness or integrityofnmnbeings." Persmsaresaidtobehealthy'wmthey are structurally an! functimally whole or sand" (p. 173). 'Ihat is tosaythattheydoncthaveanysignsofdiseaseormrbidityard possessfullvigorarrlstretgth. nerdefinitimofhealth includes the capacity to live as a lumen being within ale’s physical, biologic, andsocial envirrnnartsarriadlievesaneneasureofhis/herpctential" (Fitzpatrick & Mall, 1983, p. 139). Elysical, psychological, interpersa'al, andsocialaaectsofhealthare, aooordirgtoOra, inseparable. Health, then, rust include thatwhidlnakesapersalmman (form of mental life), operating in anjunctim with rilysiologia'il and psydaophysiologieal mechanisms and a material structure (biologic life) aniinrelatimtoooeadstenoewithothermmanbeirgs (interpersonal and social life). (Ora, 1985, p. 174) Ora (1985) oasidered rursixg to be a helping service, "a creativeeffortofmemmnbeirgtohelpamthermmanbeirg" (p. 132). The special omoern of nursilg is "the individual's need forself-careactimandtheprovisimandmanaganentof itona oartinnlsbasisinordertoslstainlifearrihealth, reocverfran 16 disease or injury, and cope with their effects" (Ora, 1985, p. 54) . Nursirg is characterized as actim, as assistance. Ora (1985) stated that"anlrse'sunitof servicemybeanindividual oranultiperson unit" (p. 251). Individuals have self-ears requisites to be met and the capabilities for neetirg than. Irriiviaaalsvhoreoeivehelpaniaare frapersonsqualifiedas mrsaarereferredtoasmrses' patients. 'Ihetermsynbolizes thesocialstatusarrirolaofpersalsmflertheareofmrses. Fran a sociological perspective, the terms rurse and nlrse’s patiat signify related statuses or positions in social groups. Each status carries with it a role, that is, a set of prescriptions fororganized actimthralghwhidlthestatus is filled. (Ora, 1985, p. 56) Ifthemdaughteristotakeactiveoontrolofherhealth, the rurse rust share knowledge openly, reinforce independent behavior, and provideanenviroment forhealthcaredeliveryinwhidlthe tmiq1eness of each self-care agent is recognized, accepted, and ailamed. 'nlenlrsenustassastheabilities ofanindividualto agageinself-care. Self-amisbcthanagoixgactivityania omfidenoe to be developed. films, the professional nurse has a major respmsibility for er'harcirg the daughter's capacity for self-care. 'Ihe mrse is practicing within an educational arri developlaltal systa functionirg in a oorsultative capacity, thus givilg the self-care agent primary mansibility for persmal health. 'IhepreoedirgdacriptimofOra'sself—caretheoryisusedasa buildirg block for oonstructim of a conceptual framework specific to theaareof‘daughters (seeFigure 1). Anoverviewofthismdel willnowbepresented. 16 disease or injury, and cope with their effects” (Ora, 1985, p. 54) . Nursiig is characterized as actiai, as assistance. Ora (1985) stated that "a nirse’s unit of service may be an individtnl or a miltipersal unit" (p. 251). Iniividuals have self-care realisita to be met and the capabilities for neetirg than. Iiflividualsvhoreoeivehelpanicare franpersa'squalifiedas nlrsesarereferredtoasnurses’ patients. 'Ihetermsynboliza thesocialstatinanirolesofpersasurderthecsreofmlrses. Fran a sociological perspective, the terms mrse and mrse's patient signify. related statuses or positials in social groups. Each status carries with it a role, that is, a set of prescriptims fororganizedactimthraighmidithestams is filled. (Ora, 1985, p. 56) Ifthe‘dmghteristotakeactivecartrolofherhealth, the nurse mist share knowledge openly, reinforce independent behavior, and provideanenvironnent forhealthaaredeliveryinwhidlthe miaiaessofeadiself-areagatisreoognized, accepted, and emanoed. ‘lhemrsenustassesstheabilities ofan individualto agageinself-alre. Self-camisbcthanagoixgactivityanda omfidenoe to be developed. ‘Ihus, the profasimal nurse has a major reqxnsibility for enhancirg the daughter’s capacity for self-care. 'Ihe mrse is practicing within an educational and develqnartal systa functimirg in a consultative capacity, thus givirg the self-care agent primry mibility for persmal health. 'mepreoedixgdescriptimofOra’s self-caretheoryisusedasa buildiig block for oarstruction of a oaioeptual franaoork specific to theareof‘datghters (seeFigure 1). Anoverviavofthismodel willnowbepresented. 17 srtmaoamm WISUCS fill-CHE IBIUTIES PREVIQS IENJIIUIE mmaszaoamnoc I I 6 | mm SELF-ORE m , u: . m . m meg, DNA NFICIT ' ' MIDI: HIT" ' | W“ I mm W mwms is TASK m arm IEALTH CARE CRITERM filF-URE MP? PG *8 mass rears GMIN nus 1 18 W nemdaughter,theself-careagent,hastheimateabilityto careforherself. Seisalpableofgoal-directedactivityand possessadecisia'i-makirg capabilities. Itisthraghtheuseof deliberative action that the individual ultimately obtains positive healthaltcalesrelatedto‘expoane. Positivehealthcarerelated toHexpoaneimlrdesadheralcetothe'IaskForcerecamended healtharecriteria;anilcmledgearrlmderstandilgofmexpoane, mragalent,arritreatnaltoptiais. 'nieself-careagartisaffectedbymanyvariablesintheaiest formetirgherhealthcaremeds. 'nieiIflivimlalizedfactorof sociodangraghic data is one variable that will ofta determine the soopeof self-care activities apersalcanperform (e.g., factors of ageanddeveloplartal state). Othervariables imludeprevials health arebaaviorsarriexpectatimalmowledgeofbeirgexposedtomsin utero,theexperiencirgofsynptms,anilmowlecbeof‘1askfbrce recmnerdedhealthcarecriteria:thaeserveasforcamtivatirg irrlividualstofoaistleirattartialmpraentcaflitiasandreflect upmtheirmeanitg. 'mesevariables,interactirgwithinthe“ da1ghter,affectthedegreetowhidlstewillreceivethereccnnerded healtharesheneeaspecifictohermSemosure. Daograrhic variables, aldlas age, sex, race, ethnicity, edumtim,ardincane,mayinpacthealthcarebehaviors. 'Ihe inportarceofetlmicitycamntbecverlookedwhaltryilgtomfierstani theinpactoftheirallturemthehealthbehaviorsofagiva populatiai. Ability to caiprehend instructims and health Wiasvarieswitheducatimallevel,asdoesthebackgram 19 oflogwledgeardskillsmmidithe‘dalghtercandrawincarryilg art self-care. Incale will affect health priorities arri the aocessability of services to follow throng) with recmnerded health behaviors. Damgrapiicvariablesin‘dalghterswillrealltinthe identificatim of significant differaices in age, race, ethnicity, cautim,aniinccnewhidlnlstbecmsideredwtmfomnatirg quecificmrsirgstrategies. Previaishealthcarebehaviorsardexpectatimscanaffectan iniividlal's patternof health care. Persaialfactors thatcan facilitate or sustain health-pranctilg behavior imlirie: the inportarne of health, definitial of health, an: perceived benefits of health-pramtirgbehaviotrs. 'medegreetomidla‘datghterplacesavaluemthe inportanceofhealthwillresultinthedegreeofinformtim-seeldlg behaviordirectedtowardbecanilgmrelmowledgeableofher‘ mum'sdefinitimofhealthwillreentintheextmt towhich she engages in health behaviors. Different definitials of health will predict differing patterns of health-related baavicrs. 'nie‘datghter'sperceptimofberefitsfrahealth-pranctirg behaviors will appear to facilitate cartirued practice of recently acalired behaviors. Mpetitim of the behavior itself will reinforce ardstragthabeliefsabartbenefits. mirgwhetheraleis‘exposedisthesteppixgstoreneeded inaoquiringrecaunariedhealthcare. Ifafenaleisunawarethatshe is-exposed,sheismlabletodioosevmethertoinitiatethereeded health care activities specific to her exposure. Knowledge of her 20 exposuremyactasamtivatimalforcetoaoqflrelmowledge, m,ardskillsthatwillahanceherhealthstatus. Aale,thatissynpta:sexperiernedby‘datghters,myaffect theilnidaioeofhealthbehaviorbytriggerirgarprcpriatecvert acticns. Ifthesynptalsareaffectirgherseimalityardabilityto beardlildra,the‘da1ghter,whethercrmtshelmavscfher exposmre,mayseekmedical attentim. Intensityofala,aswellas levelofreadinesstoergageinhealthcareactivities,willplaya roleinachringneededhealthare. 'nms,perceivedhealthstatus amearstoplayaroleinthefreqmncyardintensityof health-prmntimbehaviors. Mledgeofthefl'l‘aski'orcerecarwfledhealthcarecriteria providesalogwledgebasebywhidlthe‘datghtercaninitiatethe recanreniedhealthcareardnaiitorthatpmpernedicalcareisbeirg provided. 'mislo'iowledgebaseaablesthe‘dalghterinbecanilg hercwnself-careagent. Instmry,individualperceptiaisthatareprcposedasaffectixg thedecisim-mkirgfiiase(i.e.,useof data) of health-pramtitg behavior include: sociodanograrhic characteristics; previous health carebehaviorsandelcpectations31cmledgeofexpoaire; experience withsynptmmarrilowleageoffilaskmrcerecamerdedhealthcare criteria. Itisprcposedinthismodelthateadlfactorwill influencereadinesstoagageinhealth-prmgtirgbehaviors. Further researdlisreededtoascertainvmatextenteadlfactorcartrihrtato readinesstoelgageinhealth-prmotirgbehaviors. Fuhlrereseardlis also needed to determine quantitative and gialitative relationships beavealevel of readiness, aleintensity, andbarriers. 'i 21 Use of precedilg data (i.e., sociodamgramic characteristics; previals health care behaviors am expectatias; lmcwledge of eizpoarezeiperianewithsynptas:anilomleageof‘1askForce mcanadedhealthcarecriteria) bythe‘daughterwillorwillnot resultintakilgdeliberativeactim, daerdilgupa'iherself-care abilities and self-care behaviors. Self-are is a deliberative actial. 'Ihe degree of self-care carpetecies, that is knowledge, mtivatia'i, skills, and orientatim that an individual possesses, will influence her self-care abilities and behaviors. Her self-care abilities are reflected through the daughter's imowledge of herself; knowledge of her ftmcticnal state: hmledge regardirg the carethatsheneeds; andthelmcwleigeardskillsnecessaryto appraise, investigate, arrinekejuignatsarddecisimsregardilgher healthardmnagaentofher‘exposme. Restricticnsinher knowledge base, judgments ard decision-raking, and reallt-achievirg actions in self-care would affect her ability to initiate self-care. Self-are deficits are associated with an individual’s limitations, lack of validity, or effectiveness of self-care in which she ergaga. Self-care behavior can irhibit or facilitate the obtaining of needed health care through self-care. Self-care behaviors place animasis upm the self-direction, self-readability, ard caitrol of learning experiences of the individual self-care agent. Deficits in these areas can irhibit the initiation of self-care behaviors. It is the inability to initiate self-care that realizes the interventim of health care profusicnals, in partiailar, the mrse. 22 'mragh the intervartion of health care professimals, attention issanetinesdirectedbacktothevariablesaffectilgthe‘ daughters’perceptiasthatareprrposedasaffectiigthe decisiai-mkilgpiase(i.e.,useof data of health-prawtilg behavior). mis,anqporamityisprcvidedtoinitiate interventions thatwillassistaclientinreflectirgmorinmodifyirgfactors that influercetheirabilitytoexgageinhealth-prmgtirg behaviors. Forexarple,themrsemyfacilitatethe‘daughterinaapirirg thelmavledgeofhealthcarerecanneifiedbythemSTaskForce. If fle‘dmghterislcmledgeableabartthehealthcarerecamerfledby the‘TaskForce,hltforsanereasonismtreceivi1gthe amropriatecare,themrsecanhelpthe‘da\ghteratablish strategiestoeffectivelyaoquirethecarethatshereeds. 'Ihus,the Udaughterwillmakeuseofthedatashealreadypossessa,aniwill acmire prcbla-solvilg skills that will influence her ability to initiateself-careinthefuture. 'nmsthenirse,thraghtheuseofthemrsirgprocess,actsasa facilitator in assistilg and supporting a client in self-care adlievae'it. Nursiigcareisdirectedtowardmitigatimor elimiretiai of self-care deficits initiated by identification of the client's abilityanistragfls. 'Ihermrsehelpstheclientto identifystrergthsanddevelopthan. Reinforcanentofself-care abilities andpctentials helps todecrease the client's anxieties. Decreasedamcietyaidstheclientincbtainilghealthcaregoalsand receivethelifelonghealthcaresheneeds. Healthcarecanthenbe saghtdirectlythralghtheself-careagent. 'Iheultimategoalof 23 self-camistomirepositivehealthcareof‘expoaire,thatis, tealthcarerecameniedbytheFederalGovernnent's‘TaskForce. m 'Iostmnarize,0ra'stheoryofself-careprovidestheframemrk forthissuxlyaItisbeya'rithescopeofmyproposedframedorkto identifycmseameffectrelatimshipsrelatedtothemdaughters' atenttowhiditheyarereceivirgtherecmmadedhealthcare prescribedbythe‘TaskForce. 'misframamrkprcposesthe relatiaaipoftheself-carecaneptentiretyfor‘faale offspring. 'nms,furtherreseardlisneededindevelopirghypcthesa omcernixg potential sairces of mtivatim for prevartative behavior, testirghypctheses,aniintegratiigthefiniirgsofan explamtive/pzredictive framework which daards comiderable imrestigative effort. In Chapter III, a review of literature will be presented. CHAPTER III mama Areviewofliteramrewillbepresentedinthisdiapter inclmiveoftheresultsofearlystniiesrelatedtotheuseoflIS; camerasuidyresiltsofthemnproject;fomatimofthe STaskForcmsubsecpentestablislnuitoftheIISTaskForce recamriedhealthcare,withreferencetorecalwdationsmadeby researdxersctherthanmabersoflIS'I‘askI-‘orceinrelatimto recessaryscreaixganimnagaatof‘daughters;andhealth behaviorsofminrelatiatomlaandpapanicolaalsmear. 'Ibobtainthefullessenceofthe‘issue,itisinportantto reviavthedrug'shistoricalheritage. SmelmwnastheMiracle drtg" during its incepticn intotheniarmcologicnl marketplace, until devastatiig side effects began affectirg the lives of offsprirg ecposeainuteroto-s. Irqiiriesintotheefficacyof‘in pregnancywasthefociofreseardl. Oontroversyonthe‘isale peneateditslivelihood,butthedrugcartimedtobenemfactured anidistrihrtedinnessiveammtsdurirgthebaby-boanera. Many physicians used as prorhylactically, let as they would prescribe the useofprenatalvitamins. W Inasuidybyanithanisinith(1949)caiparingthelate pregmnciesofprimigravidastreatedwithmsmsyrmranrscmtrol primigravidas,itwasdeterminedthat3hadvalueinreducirgthe usual incidence of late pregnancy catplications and fetal loss. 24 25 Dieckmnn, mvis, Rynkiewicz, andPottirger (1953) indicate that aeofthemstserials criticisns oftheanithandanith (1949) study isthelackOfaMIateamtrolstosubstantiatetheclinicaldata (p. 1063). Alsoof significance is the fact that the cartrol sanple is43percartlargerthantheeiglerimentalsanple. (refurtherpoint topaderisthefactthattherewasmalrewaytotellifthe patiertswboweretreatedwithutooktheprescribeddosageorthe dngatall. Inrespmsetoirmiriesnedebynrs.6.v.ardo.w. Smith, researchersSauners, Iawley, andI-lertig (1949) performedastatistical investigatialoftheeffectsofstilbestroltherapyinpregnamyupm weightsofbabyandplacenta. 'meresultsofthestuiybySaunerset a1. (1949)reportedthatsti1bestrolstimilatesanincreaseinweight ardpreamblysizeofbcthinfantandplacenta. 'Iheresults ofthe suidyalsorqaortedthatnorrmtoxicpremaarreseparatialswere ermmteredafterstilbestroltherapy. Incartrasttothefiniilgsobtainedbyaithandsinith(1949),a daible-blind prospective caltrolled study by Dieckmann and associates (1953) famdnobenefits of stilbostroluse in‘patiatsbeaveen 840wanenreceivi1g‘a1g806 receivingaplacebo. 'Ihisexperima'rt wasdesignedinanattapttolearnwl'iether‘hadtherapaxtic value. I13$r'wdltsof‘thes‘uflyin'licatedthatstilbes‘troldidt'flt reduce the incidence of abortim, praemrity, or postneturity. Praetmre babies of stilbestrol-treated mthers were no longer nor menatmefortheirgestatimalagesthancmparablepreleturesin thecartrolgraipofplacebo-treatedmthers. Udidnctdecrease 26 theincidalceofperimtalmrtalitymrdiditdecreasethefreqlency ofthetcimiasofpregnancy. mvis, anassociate of Diecknann, stated: Wethimcthatthenmberofpatientssmdiedardthenethodsused slavedthatstilbestrolhasmtherapaxticvalueinpregnamy. Itispossiblethatthatanswermaymtbecorrect,butitwill takeatleastasmanymorepatientsjmtascarefullycartmlled to prove that stilbostrol administered prophylactically to normal oralmormalpregnantpatientshasanyvalueinthepreventimof the specific calplications of pregnancy. (Dieckmann et al., l953,p.1081)‘ Fergusm(1953) cmcluded thatlIShadmeffectmtheimidence of pre-eclanpsia, prematurity, perinatal mortality, fetal weight, ard thesize oftheplacenta. BrackboldandBererdes (1978) reporteda remlallatial of the statistics fra the 1953 surly of Diecknarm and associates arr! fund that was associated with significant increasesinabortions, neonatal deatls, andpreteture births. Insmmry,thereweresurportersandavidbelieversinthe reailtsofbcththeanitharrianithsuidiesaswellastheoieckmam aniassociatesstudies. mereailtsofthesmdiaoariuctedbythese mgralpsofraeardierswereatoppositeerdsofaspectnm. 'Ihe cartrcversiesonthe'therapaticuseofmsinpregramycmtmled wertheyears,mtilinl971themwuedtheuseoflsin pregnancyinrespmsetoreportsbyflerbst,Ulfelder,andPoskanzer (1971)thatclearcelladaocarcinanaofthevaginawasocairrirgin girlsaged14tozz. 'Ihisdainstratedthelinkofvaginalclearcell adenocareirmtoinuteromsexpoalrethathadocairredoreanda 2'7 halftotwodecadesearlier. 'IhelegacyoflISexposurehassince catinledtoexpani. "Inadditimtothisladrofefficacy, severalserialslag-termcalserpencesofinuteroexposureto‘have andcartinietocanetolight" (Stillnen, 1982, pp. 905-906). W unapproved‘foruseinlnmansinwuwhenfavcriteria eidstedforjuigingnavdmgs. M‘WSW,HBMWS slavtorestricttheuseof‘inthefumre. Federalguidelinesheredrawnlpin1938bythel=mtohelp assurethatfoodanddngsweresafeforlnmencmsmptim,butdid mtremiredngompaniestodmstratelag—rargesafetyorproof of effectiveness. It was not until new Oagressiaial drug regulation lawsinl9621eqairedthatnamfacturersprcveeffectivenessam safety. Formarlytlueedecades followiigtheFDA's initialarproval ofs,themuieverquesticredthedmg,despitethefactthatthe University of Chicago study published in 1953 daonstrated that wasmeless inprevaltirgmisoarriage (Orenberg, 1981, pp. 122-123). In 1962, dng regulatims were tightened. Proof of effectiveness wasplacedaithedngmanlfacturer. prroofofeffectivenesswas mtahnittedinsixmarths,theFDAwasapoweredtorestricttheuse ofthatdng. Sixnnithscmneaniwrt,arrithenemifacturersof‘ stilldidmtsuhnitproofofitseffectivemssinpreventirg miscarriage. Forreasmsthataremtclear,theFDAdidnctrestrict themeof‘au'irgpregrmcydespiteitsamsix-mrthtinelimit. Inadditim,thanAwasslowtoactafterHerbstanihiscolleagues gaveproofearlyilefltotheFDAthatlISgivaduritgpregnarcy caildcausecancerinthefeneleoffsprirg. Sevamathsafter 28 receivirgthefieldastreportmidllimcedegivadurirgpregmncy withvaginalcamerinthe‘darghters,theflreaiesteddng camaniestoisaieawarnirgagairstthelseof‘durirgpregnancy. 'miswaslayearsaftertheDieclaemsarly(1953)slnnedUtobe ireffectiveasananti-abortiveagent. InNavenoerl97l,theFmiseiedadmgmlletin, "Diethylstilbestrol Omtrainiicated inPregnancy", thusbringilgto the attartial of health care providers an inportant possible toxic effectof‘. Bythistine,21asesofclearcelladenocarcimin “-exposeddaughtershadalreadybeenraortedtothemgistryof ClearOellAdenocarcirnnaoftheGaital'IractinYairgFaales. InDecaber1973,theNatiala1CarnerIrBtitute (NCI),abr‘and'i oftheDeparhurtofHealth,EducatimaniWelfare (ncwknownasthe DeparaentofflealthardlhmnServioes),beganfomflatirgaformal stuiyof‘usedurirgpregmncy. 'merealltilgsuriywastermedthe IESADproject,shortforlmAdenosis. "Ihebasicpurposeofthe sunymsarriraeins‘toassessthenegnimdearriseverityofthe health hazard to sensed female offspring'" (Onaberg, 1981, p.124). mmmwtmsprtposedbymrlam,afterthefierbstet a1. (1971) article firstrepor‘tedthe‘cancercamectial. Iolrland arrihisstaff,afterreviavirgtheiramlIS-exposedpopilatimarrl realizilgthelargesizeoftheexposedpqmlatimarrithepotatial seriazalessofthenedicalcasequernes,wrctealettertotheFDAfor fmriirgtocarluctapreliminarystudy. 'nlisfurriilgwalldhelppay for enminatims of daughters and for the epidaiological evaluatims. Endirgvesreceived,ardbasedmtheresultsofthis 29 FDR-finial surly, Imrlarrl arrihis staff amliedto theNCI in 1973 for farm for amen larger, mlti-instimtialal study. The result of theirpreliminarysuriyarritheirpetitimtoNCIwasthelISAD project. InMardil974,theca1tractsforthesuidywereawardedarri amlti-irgtiuitimal coordinated researdiproject, "Stridy of the ImidenceaniNaun'alHistoryofGenitalnactArrmliesaniCamerin WWWMWWCW".W- ”'nlelISADprojectvassetlpasa‘fieldtesttoanswer glestials canernitg incidents, prevalenoe, andnatural history’ of diargesinthevaginaltissuesoflmdauyiters. 'nliswastoinclude astuiyof baignaswellasmalignant charges" (Orenberg, 1981, p. 125). "Infomtim attained by the institutims collaboratitg in thesaflywaildformthebasisforadvisilgoffsprirgcaicemilgrisks of develcping IIS-associated abnornelities and proper management of arm atmormalities" (Ham, 1983, p. 2). 'meNCIselectedfairhealthcareinstialtimsastheuaSAD Project's field participants to perform the clinical examinatims and tissue evaluatiais for its surly: Baylor College of Medicine: mesadnsettsGeneralHospitahtheMayo Clinic:andtheUniversity of SouthernCalifornia. 'IheMayoClinicwasd'losentcbethe coordinatilg carter for data collection amlysis; Kurland and his staffwerearpointedastheooordinatixgimitfortheentireproject. The following year a fifth institutial, the Gurndersal Clinic in laCrosse,Wiscmsinbecanepartoftheprojectasasuboartractorto MayoClinic. 'nielISADprojectwasfmdedforthreeyearsforthree millicndollars. 30 In1979,odosciartificpapersbyIISADinvatigatorsmthe firstreslltsoftheIEADprojectverepiblishedintheMardlissue ofmjmmmdboy,mfmn,etalu 1979;0’Brien etal., 1979). Briefly,thereailtscfthesetwostlxiiesslmedthat H,vhilestillacancerthreattoda1ghtersemosedtoinutero, my pose less risk than earlier anticipated. Initial clinical firrlirgswerereportedfor 3,339youlgwaien enrolledinthelEADproject. Fair-camersofthega'iitaltractwere fanriamgthetctalof3,3393da1ghtersinthesoidy. Amagthe 1,275dmghtersidentifiedthmghprenatalrecordreviaas,miowere mstrepresatativeofthetctalpqiulatimofwanenexpoeedto‘ beforebirth,nocamerswerefairrl. Ooalrraoeofabnormlsaianous oellsineitherthevaginaorcervixwasrare. Chargesinthelinirg orwallofthevagim,includilgada'osis,verefamiin34percentof therecordreviavgraip,65peroentofthereferrals,and59percent oftheMlk-ins". Amgtherecordreviewgralp,waaZ6yearsof ageorolderhaddlargesinthevaginalessfreaia'rtlythandid yangerparticipants,t1maggestilgfllatsaneeffectsof‘ mnemyhavelesscmsealenceaswanengrwolder. Also,the mimestigatorsreportedthatthedegreeofbaigndmgesofthe vagimlarricervicaltissuesmsassociatedwiththeweekdurirg pregnamyinmidlthemtlersbegantakirgmsmouloy,kufmn,et al., 1979: O’Brien at al., 1979: Orerbexg, 1981: Halli), 1985; and ROI, 1985). Barnesetal. (1980) piblishedalISADreport, "Fertilityand OrtcmeofPregmmyinWanenmposedmgLermeieulylstilbestml", statirgthatwanaexposedto‘beforebirthwerefamitohavesale 31 increasedrisktopregnanciesoftheirown. ‘Iheriskofan mfavorablepregnancyaltcmeincmparismwithagramofsimilar mmtexposedto‘irdicatedariskofmarlyaleand fluee-anrterstinesthatofthecmparismgrap. Went» difference in the ability to caiceive a drild was falnd. may,szyfelbein,etal. (1981)reportedtheresults ofastudy inulidlthedataslggestedthatasS-exposedmgravolder, vagimlada'osisregressestosquannnmtaplasia. Uhtilthattilne, medataamestedthattherekasnodifferenceintheratesof samcelldysplasiaanagexposedanim'exposedwmen. 'Ihe authorshowevercautiaaedthatthisisaiecanmlyberesolvedas thesepatientsarefollanedcverthenextdecades. InDecenber 1984, "Increased Incidence of Cervical arriVaginal wsplasia in 3 , 980 Diethylstilbestrol-Exposed Young Worm" was plbliaed indicatixgthattheinvestigators (Ritcy,Noller,etal.) famd the inciwice rate for dysplasia was significantly higher anug wanenexposedprelatallytothanamrgthemtdledcartrols (15.7 casesvs.7.9casesper1,000persar—yearsof follow-up). Both [ES-acposedardmexposeddatghtersweregivainitialexaminatias, whaenteredinthellSADprojechidisluvedsimilarratesof dysplasia. Overseveralyears,dysp1asiahaddevelopedinthe ms-efposedwmlaattwicetherateofthemrexposedgralp. Accordirg tothelISADreseardiers,dysplasiararelyocairsinvnnenwhohave reverhadsexualinteroanse. 'meairratstniyfanriadefinite cawectiminbcththeS-exposeddaughtersaiflthemiexposed dmghtersbeodeadyalasiaardanearlyageoffirstinteroairse (before 20), mltiple sex partners, nultiple pregnancies, and exposure 32 toamleseimalparu'erwhohadhadseveralseimalpartiers. 'Ihe mreseardrersalsodisocveredthatgalitalrerpesocalrredmiceas oftainlE-exposeddaujrtershrtdomtkmwthereasm. Saleof thesefactorsareassociatedwithaibseqmtdevelqrm'rtof cervical cancer, thatis, earlyageof first interoairse, nultiplesexual partners, andherpes. habboy, Noller, etal. (1984) postulatedthe two-fold imideioe of dysplasia observed in the IIS-exposed daughters inthissariynedethanatgreaterriskinlaterlifeofdevelopirg micalcancerthanmiexposeddmghters. 'Iloofavcasesofcarcinana insimhaeverhave‘beenobeervedtodatetoreadianycmclusicrs abalttheriskofcervicalcancer. IISADinvestigators,aswellasctherinterestedreseardlers, havepblishedadditiaalscientificreportsmmnyaspectsofthe problensoflISeupoalre. 'nieinformtimgainedbytheIISADproject helped to four the basis for advisirg offspring calcemixg risks of develaing “associated abomlities and the proper mnagemrt of sudlahlomlities. A five-year grant, artitled "InUtero Eiqaosure: Carmrandhedicnllllness",msamrdedin1984tothe Mayo Clinic, with Dr. KanethNoller amointed as project director. 'IhisgrantwasawardedaftertheNCIfmdirgforthelISADprojecthad curried. aeoftheprincipalaimofNoller’sgrantistcmintain caltactwiththepreviaisly assabledlISADcdlortofthe3,980 IIS-exposeddmghtersardl,033 oontrolsbydstaininginformtim arnlallythraghmiled‘aiestimires (NCI, 1985, p. 2). Dr. nirlanisaidduringan interview thatnavproblas, incltdilg aseoaripeakincidenceofinvasiveclearcellmmerin‘ daughters, mightocairastheuiS-exposed populationgrowsolder, 33 anithataxhatrenicouldailybeacalratelyassessedarrl mietetreatmartsdevelopedthraighasaflysmhasthe MAD Project. (Orerberg, 1981, p. 127) mm Ooincidart with the publicaticn of the HEAD Project’s first finiirgswasthethimoftheTaskForoe. InFebruary1978, flle‘laskForoewasestablishedbyunauliusB.Ridm1d, Waffllemitastata, atthebehestOfJCqu Califam,thenSecretaryoftheEHEW. DianeJ. Fink, M.D.,director oftheDivisiaa ofCancerOa'rtrolandRehabilitatim oftheNCI,was amointeddlairpersmofthe'l‘askr'oroe. The'I‘askForoewascaiposed of14plysiciansarrireseardlersoftheNCIvmosemissialwasto reviavallaspectsofthe‘probla,tomkerecaunerriatia1sfor healthmreoftheexposed,arritoraearadirectionsformedical investigators. The Task Foroe was asked to specifically investigate thepossibilityofanirrzreasedriskofbreastcameranictheramors ianothermtheuseofasapostooitalomtracative; almornnlities of the \lrogaital tract in mle offspring: ahiormlitiesofthevaginalardcervicaltissuein‘fanale offspring: and othersarly daservatims onthehealth effects of 3. mSepteuberzl, 1978, sixmrthsafterthelISTaskForcebegan itsimrestigatim,theirfindirgsvereamianged. NSTaskForoe wherswereguidedbyscientificpapersabaltvariaisaspectsof‘ werepresaltedinaammryreport'begimirgwithanintroductimard followedbydisaissimsofW;nothers:Usas: psychosocial implications of exposure; airrentuses of (arri 33 airlthatsudlatradcaildmlybeaoairatelyawedam amiateumonartsdevelopedflimgliasanyMastle mSAD Project. (Ore'berg, 1981, p. 127) W Cbireidart with the piblicatim of tle [ESAD Project’s first finlinfiwastlefonetimoftleS'I‘askForoe. InFebruary1978, enureskacemsestablishedbynrJuliuseRidma, Surgear-GeneraloftletlnitedStates,attlebetestofJoseph Califam,then8ecretaryoftlem. DianeJ. Fink, H.D.,director oftheDivisial ofCancerOontrolandRehabilitation oftheNCI,was amoinbeddiairpersmoftle'rasklloroe. 'IheTaskForoewascalposed of14rhysiciansarrireseardersoftleNCIwhosemissimmsto reviavallaspectsoftle‘prtbla,tomkerecamendatimsfor lealthcareoftleexposed,andtoreseardldirectimsformdical investigators. The Task Force was asked to specifically investigate tlepossibilityofanirereasedriskofbreastcareerandctlerumors inHmders3tleuseofasapostooitalcartraceptive; abmrmalities oftheuroga'iitaltract inmmale offspring: ahermlitiesoftlevaginalanicervicaltisaein‘falele offsprilg; arri otlerearly deervatiae mtlelealth effects of 3. mSeptenberzl, 1978,81xmrtleafterthe'laskForoebegan itsinvestigatial,tleirfiniiigswereamuneed. IISTaskForoe uberswereguidedbyscientificpapersabaltvariaisaspectsof‘ werepresa'itedinaammryraort‘begimlirgwithanintrodtetialani followedbydisalssiae of [Is daughters: “anthers; ems; psychosocial inplications of‘exposure; air-rentusesof‘ (and 34 otter estrogens): and reoumrlatiae for public and professional salmtia'i. Secretarymlifareinapressreleasewithtleamryof tlelE'I‘askForoewortstated,"Foru§5-exposeddaughters,aclear associatiabeodeaencpoairebeforebirthto‘andclearoell Woftlevagileorcervixisestablisled. Estimtesof ireidenceofclearcelladaecaroilunaarebeaiealAperLOOOam 1.4per10,000thraghage24" (Ram, 1985, p. 3). mOcther4,1978,withintwoweeksoftleTaskForcereleasecf its firriilgs, Surgem-Gaeral Julius Richunri issled a rilysician advisoryanmrizirgtleTaskForoefiniirgs. "misadvisorywas ralarkablebeamseitmsmlytlethirdcareervanlirgeverisaedby tleSurgeal-Gereral,tlefirstthnilwolvilgcigarettesarrlasbestos” (Orerierg, 1981, p. 134). 'Ihisadvisorywassenttoeveryphysician ardostecpathintlecamtryasaresultofrecamerflatiaemdein therepcrt. 'nesix-pageadvisoryca‘itairedarecalmflatimthatall physiciareretifywammtowlmtleyhadprescribed‘oftleir eiipoairearriadvisethaabarttleieedforfollav-upmdicalcarefor themelves and their offspring, and to provide this informtim withartchargetothepatient. Alsoinclrdedinthisadvisorywere specific recumrlatiaecaeernilgeiaminatiae of “daughters, sas,arrlmtlers,ardcaeernilgtlefurtleruseofestrogens. 'ne inportance of reallar follow-up examinatiae for “exposed wmen was stressed. Oraberg(1981)statedinregardstotleaforcaentof roommamtiaeintlephysicianadvisorythat,"...,fawseatohave complied. lbsthmenhavelearredoftlefiprcblathralgh magazines, newspapers, and public service canpaigre” (p. 134). 35 'Be'l‘askl‘broerecawaedinJannryl985todisaestle1978‘ TaskForoeraortarrltoreviavtleresultsofinvestigatiaewhidi hadbeanpblisledsireetleraortoftlel978‘l‘aski‘oroe,andto updateanycaelusimsanirecannendationsfrathatreportas mints. Insunmry,tle1978TaskForoeaddressed recmmndatiaeforscreairgtcdetectearlyocairreeeofclearcell adaemrciraaardmrcamaeaitlelialdnangesoftlevaginaani cervix. ltwasdetenninedbythemesm'raskfomethattne mingprocemresestablisled in_1978 are still amrcpriate. 'Ihus, tlerecanmfiedlealthmreestablisledbytle‘TaskForoewillnav 'Be‘l‘askl‘oroehaspiblisledrecmmerdatiaeforhealthcare providerstofollcwinscreairg‘datghterstodetectearly omlrrereeofclearcelladerecarcinaneanrlrm-careeralsepitlelial changesoftleimginaandcervix. [IS-exposeddalghtershavea terriaeyfortledevelqmentofareasofcervicalardvaginal netaplasia. 'nms,tlesanplirgoftissuetoestablishadiagnesisof dysplasia by colposoopy and biopsy is sanamat canplicated. It is inportantthattle‘datglrterbeexamixedperiodimllybya fi'lysicianvtecandetectstbtlediargesintlecervixanivagina. 'Ihe Sdanghterslmldhaveanammlpelvicemmimtim,Papaear, iodine staining, and a colposcqu ale/or biopsy if indicated. If any ahermlitiesarefamiintleIISdaughter,“slmldseea [hysician experienced in emminatiae using colposccpes. If treatment is irriicated, secald opinims fra physicians knowledgeable abalt 35 'lhe'laskForcereoaweredinJamaryl985todisaisstle1978ms TaskForcereportanitoreviatleraultsofinvestigationswhidl hadbeapblistedsileetleraortoftlewm‘TaskForoeanito updateanycaelusiaeanrirecmmflatiaefrathatreportas amrcpriate. Inamry,tle1978TaskForoeaddressed recam'datiaeforscreailgtodetectearlyooalrrereeofclearcell adenecarcinmanirun—careeraisepitlelialdergesoftlevagimani cervix. Itwasdeterminedbythel98sm'laskromethatthe screeningprocedmesestablisled in‘1978 are still appropriate. ‘Ihus, tlereccnmriedlealthcareestablistedbytlemsmskmroewillm 'Be‘TaskForoehaspublisledrecanmaflatimsforlealthcare providerstofollowinscreairngdaughterstodetectearly ooalrrenoeof clear cell adaecaroinanaaniml-cancerousepitlelial dergesofthevaginaanricervix. lm-euposeddaughtershavea taflaeyforthedevelqnertofareasofcervimlardvagiml mtaplasia. 'Bms,tlesanplingoftissuetoestablishadiagmsisof dyalasia by colposcopy and biopsy is sanewhat canplicated. It is inportantthattle‘daughterbeexamiredperiodioallybya mysicianwlemndetectabtlednangesintlecervixardvagina. 'ne “daugntersleuldhaveananmalpelvicexamimtim,Papanear, iodine staining, and a colposoopy anti/or biopsy if indicated. If any ahermlitiesarefan‘flintle‘dmghtensteslmldseea finysician experienced in emminatione using colposcopes. If treatment is indicated, second quinims from physicians lmowledgeable about 118 35 'meTaskForoereoawenedinJamaryD85todisaisstle1978‘ TaskForoereportarrltoreviadtleresultsofinvestigatimswhidn hadbeanpblisledsineetleraortoftlelflB‘TaskForoeanflto updateanycmclusiaeardrecameniatiaefrathatreportas amrcpriate. Inamry,tle1978TaskForteaddressed recumriatiaeforscreaingtodetectearlyooalnereeofclearcell adaecarcimmarrlrm—caneerwsepitlelialdiangesoftlevaginaard cervix. Itwasdeteminedbytle1985mS'IaskForcethattle screailgproceduresestablisled in‘1978 are still appropriate. ‘lhus, tlereoanmrledlealthmreestablisledbytle‘TaskForoewillrew file‘TaskForoehaspublisledrecanmeeatiaeforlealthcare providerstofollcwinscreailg‘datghterstodetectearly ocalrrereeofclearcelladaecarcilmardnm-careeralsepitlelial diargesofthevaginaandcervix. [IS-exposeddmghtershavea tariancyfortledevelqnentofareasofcervicalarflvaginal mtaplasia. me,tlesanplirgoftissuetoestablishadiagmsisof dysplmia by colposcqny and biopsy is smewhat omplicated. It is inportantthattle‘daughterbeemmiredperiodicallybya pnysicianwlecandetectsubtlediangesintlecervixandvagina. 'ne ‘dmmltershaildhaveanammlpelvicexamimtim,Papsmear, iodixestainirg,ardacolposcqnyanri/orbiopsyifirdicated. Ifany abermlitiesarefanrlintle‘dalghter,sheslnlldseea mysician experienced in eiaminatims using colposcqes. If treatment is inrlicated, secari cpinims from physicians lowledgeable abalt 36 exposuresfimldbesaghtbeforeadecisimismdeahs.nepartment of niealthandnhmanServices, 1985). Periodicscreaingexaminatimsshouldbeginatageuorattle aeetofmrees,whideverisearlier,nmlosstlereisvagiml bleeding ordischarge: bleeding or discharge should be evaluated withaltdelay. acposeddaughtersanitneirfamiliessnmldhave adeqnateexplanatialarriomsideratialoftlephysimlani alnctiaialaspectsofthisexamimtim. (U.S.Daartnmntof HealthandliimnServims, 1985, p. 22) Andersmetal. (1979)reportedtheindividual at high risk for develqna'ltofadaecarcilmeismdertleageof24,hassyuptansof ahermlbleedirgordisdlarge,orhasextensivecolnmerectopym thecervixorinthe‘vagira. 'Itesereseardersirdicatedthattle mstinteleesealdlformlignancyslmldbeoaductedinwanen metingaeormreofthesecriteria. 'Ihevastmjorityof S—relatedmlignaneiesocalrbemeatleageofuandtle middanenties,withapeakineideneeof19. Altleughtlemdeniaof developmentofmlignancyismtloown,oretleoryhasbeathat adogaaislermessecretedbytlearariesmyplayaroleintle absequartdévelopnentofadenomroirma. 'Bepresenceofahermlbleedirgordisdnargeshalldbe investigated imediately at anyage. Fuller (1978) reportedthat, "Bleedingordisdiargehasbeenthepmsentingsynptcminmorethan 80%ofpatients;lasthan20%havebeaasynptaraticattletineof diagnosis" (p. 204). "Atrnorml bleeding in adolescent girls can no lagerbeassumedtobeduetoanevulatim,andtlepossibilityof 37 vagiml timrsleuldbe excluiedbyarhysician's examination" (Herbst et al., 1971, p. 880). 'nescreairgprocedureslmld incllfieathoraghpelvic examinatial using careful palpatian (feelirg) , cytology tat (tle PaporPapanicolaalsmear), anitissuelnspectimileludilgtle useof ae-half strengthaqteais Ingol's (iodine) solutian for cervicalandvaginalstaining. (Naetainedareasofthevagina myiniiate adenosis.) (U.S. Departmentof l-lealthan'dlnman services, 1985, p. 22) 'neinportareeofincluiirgalloftlecanponentsoftle eimimtianhasbeastressedbymnymrdlers. Robbcy, Friedlarrler, et a1. (1976) reported their study indicated that the presaeeofnlcinaiscolnmerormtaplasticsqemecellsinvaginal scrapesissrggestiveofvaginal adenosis, butthatvaginalcytology cannot-be considered anuniformlly reliable screaingtedmigle for detectirgthepraenceofthisdisorder. Bilboet a1. (1977) reported intheir follow-upstmdythat cytology results reflect tle amiate sanplirg technique of taking fairsaaratescrapinmfratlewallsoftlevagim, inadiitia‘nto tleectocervicalanrierrlocervicalanears. 'nesereseardersstated that tle cytologic findings indicate that tle tedmique is reliable as ascreairgtestforvagimlepitlelialdiargesintleE-exposed femles. Fuller (1978) reported that cytology alae will cutest approadnatelysoperoentofclearcell adenocarcinanas. ‘Ihedecrease insereitivityofdetectionisattributedtothepresenceoflarge numbers of inflanmetory cells or to the well-differentiated nature of tleumbr. 38 antheotherhani, Anxiereonetal. (1979) stated, ”W Papanicolaal vaginal clears, alag with regular, careful palpatia'n, anribiopsyofallaepicianscysticornodularvaginalmsses,are nininn realiraats for screening high-risk patients” (p. 298). Pap aearshmrebeasuocessfulindetectirganlynperoentofloewn clearcellach‘lmrcims. Factorsthathavebeanida‘rtifia'ltobe respa‘nsibleforfalseregativesnearsmybednetoinadeanate sapling, subepithelial locatian of tle tumor and delicate nuclear emanatinpattemseeninsomeumoroells. Ardersanetal. (1979) indicatedthatsubmoosalmalignamiesthatmaymthedetectedby cytologymybedstectedupmcarefulpalpatimasaumbrmdnle. 'neyalsoiniicatedthatiodilestainilgislelpfulinidentifyirgtle extantoftleimnaturetransfomtianzae. Cautia'nshaildbe eoeroisedwheninterpretingbiopsies,sincetissnecbtailedfratle periperyofaomrmdulemyhavealoumlignantappearanceani thusbeoanfteilg. Sdniller's iodilestainilgissignificantintleexaminatianofa “daughter. lbmlsqmmnsepitheliunoftlevagimcmtains glycogen. nglyoogareactswiththe iodine-cantaining solutians, almiformbrowncolorantlenormlcervixandvaginaisproduced. Iodine stairs mly tle norml (highly glycoganated) same aithelium that lines the vagina and cervix. Areas of columnar aitheliunn including areas undergoirg squamls mtaplasia do not possessglycoganandthusdonotstain. Also, mlignantchangesin thecervioovagimlepitlelinmdonctreactwithiodiiearritlerefore are able to be detected by biopsy of tle nan-stainirg aitleliunn. Biqlsies of all red or nan-stainiig areas of tle cervicovaginal 39 epithelimnnstbeincluiedintheinitialevaluatiancftle‘ daughters. Usecfacolposcqneforthisevaluatianwillassistthe lilysicianbyslurilggradatianscfdlanpanitargetirgbiqeiestc tlemstahnormlareas. Oolposcopyisusefulinpatiantswith abnormliodinestainirgorcytology. 'neretpiredfrecpencyof oolposcqnic examinatiae varies with tle degree of columnar ectcpy and imature metaplasia emnntered (Fuller, 1978; Andersa'n et al., 1979: Scroll, May,_ard mlley, 1981). Usecfacolposcqle (aniletrunnatforexaminationcfvaginalarri cervicaltisstesbymanscfmgnifyixglenses)isnctreqfired ateveryexaminatianof‘qurters. Oolposcqushanldbe utilized: (a)ina11caseswhereahennalcytclcgy (Papaear) isdnserved; (b)incasesofextensivecrwidespreadaithelial derges(sndnassa.nannemtaplasia);and(c)wlerefeasibleas partoftheinitialexamination. Itnustberecognizedthat colposcopymybe a relatively expensive procedure, arrimst rinysiciansdoncthavecolposcqesortlespecialtrainingreeded fortheirnee. lennyoftlednangesmichcanbeobservedwith tlecolposcopecanalscbedetectedbyuseoftlemxhsinpler and less traumatic technique of iodine staining. Bicpsiesslmldrntbedoreraltinely,hrtslmldberesenred forspecificiniicationssudnasahnormlpaptestsorctler evidence of significant epithelial abnomalities. (U.S. Departmntcf lhaltharflfllmanSerViQS, 1985, IP- 22-23) Orr et a1. (1981) raorted the anatannic, cclposcqaic, cytologic, andhistclogicfirrlingsofttecervixinmohmenexposedtcflin utero. In 14 patients, mrkeddysplasia—carcinana insituwas found. ”mam m oft m e. m 1985 Figs 40 'neirdatastraglyagmstedthatwaenaposedtc‘mybe followed safely with mpanicolaal smears and colposcopic examinatims providedthatbcthtlecytqnatlelogistsandcolposcqlistsareamrecf tlemtaplasticdnangesintle‘progenythatdistinguislesthan fravmnennwleweremteognosedto‘withcervicalintraepitlelial neqnlasia (CIN). 'nesereseardersalsoindicatedthatabiopsy shalld anly be perfcnned if indimted by cytologic atypia, evidence of advancedCIbecolposcopic examination, crpraence of an invasive lesion. Colposcopic examinatian of s-exposed wanna can be confusing aetoactivemtaplasiathatmimicstlepattemsofcm. MHTaskFOroehasrecamdedthatdaLghtersslmldbe enaminledminimlly,atleastanceayear,withmorefreq.ent enminnatians for those with extensive or atypical epithelial denges (U.S. Deparmntof l-lealthanriHumnServims, 1985, p. 22). Prainent as researchers (Fuller, 1978; l-lerbst, 1984; Johnston, 1983:8obboy,Noller,etal., 1984:andu.s. Departmentcf nnealthand mmnServices,1983)areinagreanenttletrantineexaminatianoftle dalghtersexposedtcsinuterocanbeperformdatyearly intervals, unlessmorefregmntevaluationisirdicatedintle presence of cytological or histologic denges. nldnattartianhasbeagivatotteexaminatianandmnitoring cfthe‘daugnter's genitaltractannanalies. Inadiitiontoclose screaningofthevaginaanicervix,tle®TaskForce(l985) recanmendsbreastexaminatiansofS-dalghterstccmformwith alrrentNCEIguidelires (U.S.!hpartnentcffiealthandllmnanSen/ice, 1985,p. 23). mnyqestimsrenaintcbeansueredabanttlelealth risksrelatedtcmsexpoaire. IISdaughtersarejustncwreadnirg 41 tlaagedmhreastcarnerbegimtoamearamgallm. Asan WWW, ". . . thebiologiml raticmale forincreasedrisk ofbmastcamfran‘madstsfordaugtmsexposedin utero, wwellasfor antlers" (U Action Voice, Sumner1986, p. 1). ms,theinportameforfurthermeamhtodeteminethefl W'sriskforbreastmisstxessed,assmhinformatim will‘ajdthe‘dmghtersinseeldrgmriatebxeastmemmas flaeygrwolda'. Greaiaexgetal. (1984), inanNCI-sugpoxtedsmdyof 6,000 IIS-exposedardma—eaqaosedmthem,fanflthe‘-exposedmtherto haveamderateirmeaseinbreastmmerimiderne. 'meywere daservedtodevelcpbreastmatarateofalmstmearduxe-half fimsmfmutlyflnnmamblemrémosedmflm. The invetigatorsweretmabletodiscemwithoertaintythat‘itself accumtsforaxhelevatedixcidenoe,animtsaleathermreoognized factorinfixemtposedm. 'Iheriskofbreastcanoerinthe Wmappearstobelesstlmthatassociatedwitha positivefamflyhistoryofbmastdisease. Accordinatothese investigators,theriskinS-exposedmtherswasthesameasthe riskinma-exposedmmtilappmximatelynyearsafter exposm'é. MWm'sriskbempmivelygzeatermfl Wwithtime,withthehighestriskinms-exposedmthers 60yearsardolder. Mortalityfranbreastmmerdidmtameartobe significantlyhigharinthissmdy. 'Iheoldest‘danghtemamamroadfirgtheirearlyw's. Many mestimsreminmaamredmgamimfluehealthrisksmlatedto‘ masflesemapproaditheir40'sard50's,ag$atmid1 42 theixcidenoeofmnoerircreasesshaxplyinthegmeralpqnlatim. Asmabugusai) states, In the “-unexposed pqnlatim, invasive caminana of the vagina misesabartflofallfanalegmitalcnmers. 'memeanage ofmfingetitisSéyeaxs. Willthemnalagimpmooess triggeraseoauwaveofimsivevaginalmrnerinthealready sensitizedtisweof‘daughters? Unforhmatelmthisisaqmtimmlythepassageoftim warmer. (p.53) Inmry,the"raskrbmeestablishedmoamadatiomfor healthoareproviderstofollowinscmenim‘daughtersbasedm reportsfrmlISADsindies. Wersybetweenreseardnesastothe efficiency ofscreeningpmoedures(i.e.,l>apanear) WW1“ inthe literature, but the guidelines are clear. W Historically, the W patient, because of prevailing theories abaxtwman'snamreardplaoe,wastxeatedinasubordinatenamierw the pmdanimntly mle medical profession who were ascribed with a highdegreeofpmer. meexelimitedbythevictorianmentality thatprescribedmuequalstamsforminsociety. wringthepast oamuy,unwmanhasevo1vedfmpatierttooormr. Sinoethe m'swvanentofthemm’s, wunenhavebeoaneixm'easingly hmlvedmmalm-zolatedm'mwmagmdmnmberof critiqxes of medical services zeflectim caramel- dissatisfactim with omventiamalhealthcare. "Irrieed,sanecreditthemn’smvanent in the United States with the 01:1ng oonscimsmss about self-care" (Woods, 1985,, p. 227). 42 theixcideneofcamerinzmasessharplyinthega'eralpopnatim. AsOra‘bergu981) states, InthelIS-tmexposedpopnatim,imasivecamirmofthevagim misesabartztofallfanalegmitalm. 'lhemanage ofwunnwhoqetitis56years. Willthenonnalagixgprooess triggeraseomdvmreofinvasivevaginalcanoerinthealready sensitizedtissueof‘daumtexs? Urnfortmutelmthisisacpestimmlythepassageoftime oanarswer. (p. 53) Insumary,the"raskForoeestablishedreoannaflatimsfor healthcampmoviderstofollwinscreenim‘daughtersbasedm reportsfranlISADstlflies. Outravusybememreseardxesastothe efficianyofmmimpmoednes(i.e.,mpanear)ramimprewlart inths literature, but the guidelines are clear. W Historically, the wanan patient, because of prevailing theories abaxtwman’snatmeaniplaoe,mstxeatedinasubozdinatemam1erby the pmedaninamly mle medical profession who were ascribed with a highdegreeofpower. WmlimitedbytheVictorianmmality thatprescribedmxeqnlstamsforminsociety. wrixgthepast catamthewmanhasevolvedfrmpatienttooonsmner. Sinoethe m’smrtofthe1970's,wunenhavebeouneirmeasimly umlveainhealux-rslatedomoensmmmagmwimnmberof critiques of medical smioes reflecting oonsmner dissatisfactim with omventianlhealthcare. "Irdeed,sanecreditthemn'smvenmt in the United States with the original omsciousness about self-care" (Woods, 1985, p. 227). 43 "Asmbecmemrecametmtasadvocatesfortlalselves,they willbecmestnngeradvocatesforaninprcvedhealthcazesystan" ((1101, 1985, p. 15). 'meattainna'rt arr! retentim ofqaodhealth oftenrestswith the‘mn’scwnbehavicral practices. "Peopledaoose toalgageingivenbehaviorsfrunarangeofoptimsbasedmtheir perceptimofthebehaviorsardoftheoptimsavailabletctlm" (laffrey, 1985, p. 279). mmmvisitstolhysiciansarflusehcspitalsmmcften than mm (even when hospitalizatim for delivery is excluded). Wanen throngl'nout their life span, but particularly wanen in their middle years,.aremreliloelytoutilizearegularsanceofcare,tccbtain this firm a private physician, and tovisit the physicianmore often thannen. Irxzreasedhealthcareutilizatimmycmtrihrtetowunen's lungevityasmcrefmtpentcmtactcanallcwforearlydiagmsisam treatnem: (Rice, Hing, Kcvar, s. Prager, 1984, pp. 17-18). Mortality statistics reflect a partial picture of health care needs for a givm pqmlation. Health care new specific for wunen, aswell as specificto apartimlar portion of the life cycle, canbe identified. Instmry,m'smleinsccietyhasdlangedardcmtrib1ted tcheradvocacyfcrself-care. Citedthmnglnltliteramreisthe m'simreasedutilizatim of health care. prroperscreening procedneswereelplcyed,herfmq.artcmtactwiththehealmcare systa: could allow for early diagnosis and treatment. No literature focusingmthehealthbdlavicrcf‘daughterscmfldbefm. W129: ForwunenagedZS-flyears,breastcancerardlmxgcancerarethe leading causes of death due to malignant moplasns (American Cancer 44 Society [MS], 1985). Therefore, early detectim is of particular inportancetomofthisagegrup. Sirmmstbreastcancersarefamibymnenttmelves,m1th1y SEisaninpcrtantprevaxtativemasme. Omseqnt'rtlmthereare mnyshfliesthatreseardathefactcrsfliatinfluelnetheperfonance cfSE. "Breast self-minatias by health professicnals, and mngrafiiyareassociatedwiththegmaterlflaelihoodofdetecting lesiaasofsmllsize.... 'Ihebesthopeforbreastcancertoday lies in secamry preventim specifically, early detection and treatmrt" (Emster, 1984, p. 196). Woods (1985) reportedthat self-care patterns revealedavariety ofselfécaremeasiresamcophgwithsystarsinmysspecifictothe system. 'mepnposechood'ssttnymstceuplcrethetmiversaland illness-related, self-care activities aplcyed by yumg adult harried m. Nirety—sixmzomwyearsofagekeptadaflyhealth diaryforthreeweeks. Intrfisdiarytheyrepoztedtheirregular tealmczre,synptcnseuperiencedead1day,aniself-careactiasin respmsetosynptms. Atctalcf 1,140 universal self-care activities mreportedcverthethree—weekpericd. $Ewasreportedasa miversalself-cnreactivitybymlyaxewunanofthe96inthis study. Ansel, Grater, andBalshen(1984) suldiedtherelatialship of physicianreinforcanentwimBSEbehavior. ImsmxhasmEisa healtl'r-relatai bdnvior ard that the physician is mm the min scurce of credibility inhealth matters, the researchers hypothesized um: reinforcanent by the physician would be highly effective in 45 mtivatingwcnentcdcm. Fifty-nimpercmtofthewmminthe sanplewereagedwyearscryumger. 'medatashcwedapositive relatiaiship between physician reinforcatait of BSE behavior and SE practice my the subjects. Similarly, the higher the level of reinforcala'ttfrcmthephysician, thegreatertheprobabilityawunan would practice $13 regularly (at least cnce a math). Also, self-cmfidence in performance of $13, knowledge of breast cancer etiology, am hmledge of risk factors of breast comer were associated with practice of at a statistically significant level. Although the data is iniicative of a statistically significant positive correlation‘ between physician reinforcement and $13 practice, the role of physician as mtivatcr for SE within the cmtext of routine medical practice has been dealt with superficially and not adequately investigated. A prospective stuiy could canlusively denustratevheuleracausalrelatiafliipexistsbemlhysician reinforcela'rt and m practice. A stuiy by O’Malley, Fletcher, and Bmce (1985) surveyed 80 physicians fran four wecialities (Family Medicine, General Medicine, Gerard Surgery, and dastetrics arri Gynecology) to investigate how these physicians taught ass. Only half reported persaIally teaching SE. Favpxysiciamrepcrtedroutinelyusingtedmiqmtoassessm ompetecy. Severty-twopercmthadmformaltrainirqinteadmr; $13, mileIOpercartclaimedmtniningatall. Tedmiquesusedto teammvaiy, arusomephysicians lackthetzainingtoteachass. maniZapla (1985) performdarardanizedtrialtcinprure mperfomnceamgccllege-agewunen. 'Ihemjor interventimwasa mgrapeducatimulcimcafluctedinclassroananimrkstw 46 settings. 'mepre-interventimardsix-mrth-afteraperinental cca-ztrolccuparismsfrcmthestmysuggestthat1731139311)!"—3193“ted edxntiaial programs can significantly improve early detectim behaviorinwml. Inmry,researdiershavereiteratedtheinportanceofthe mrttllylasaprevmtativemeamre. Also,researohershave reportedthattherearemanyfactorsthatinfluencethehealth behaviorofawunaninpracticingmrmlym. ms,althou;hsbxiies haverepeatedlystnwnapositivecorrelatimbetween‘ardearly detectimofbreastcancer,itisthevnnanvtndlcoseswhethercrnct tcperfomtheSEorpositivehealthbehavior. 'Ihereascn(s)awunan performcrdcesmtperfcrmmEcmtinlestcbeexplcred. again; researd1,assesaurt,aniinterventimneedtobecmtiruedifthe perfcmmelevelsfchSEaretcincrease. Wm AccordingtctheAcs (1985), themare 14,000 estimtedcasescf invasivecancercfthecervixand45,000estimtedcasesofcnncerin situamlally. 'mePapanearisaninexpensivereliabletesttc screaifcrcervicalcancer. 'merearedifferentopinionsastchcw oftaiaPapmarmedstobedale.'meA£Sprescribesthat asynptanticmbebaemZOardSSyearsofagearetcreceiveaPap neareverythreeyearsaftermonegativeanearsareyearapart. An initialPapsnearslnfldbeobtaimdbyageZOoratthemsetcf semal'activity. Needle(1976)repcrtedthat 33.9percentcf collegewulalseek gynecologicalservicesfordaeck-upaniPapsnear. Petr-avague, mymlds, Gardner, arriReadirg(1979)st1fliedtheattitudescfm 47 towardgynecologic enmimtim. 'Ihese researchers found thatwunen are uncomfortable with the physical disccmfort of pelvic minutiae. Alsc,thesereseardiersfcmflthatvnnenmedandwant tcbeedmtedaboutthegynecologicexaminatim. 'nm,lowingmre abaxtthegynecologiceamimtiqufldmakethemmre cunfortablemringtheprocedn'e. Midlielutte, Diseker, Young, and Hay (1985) investigated the artartofmmpliarnewith follow-uptcscreeningforcervical dysplasia at a public health family-plming clinic. Nanmpliance in theshldywasdefinedasfailuretcrespadtomtificationcfan ahnmlcervicalsnear(ClassIII,IV,orV)byfailingeitherto mkeafollw-upappoiJMtortokeqasmtlanappointmrtafterit was scheduled. 'lhe sanple cmsisted of 177 wanen, of which mimtely 17 percent of the sanplewere noncalpliant. Itwas famdthatmacmpliantpatientsweremrelikelytobemmrried, lessechcated,yun'qer,anitchavefadertctalhealfl1prdalelsthan m who returned for follow-up. logistic regressim analysis revealed that the amber of health problems ard educatimal attainnent werethemstinportantpredictorscfnaicmpliame. Inmry,thePapsIear,anine1qaensiveardreliabletesttc scremforcervicalcamer,ismtm1tinelyusedbymnywunen. Barrierstoreceivimscreeningforcervicalcarnerardwnmpliarce vithtonm-upofabmnalpapsnearresiltsomtimetobeecplored. Iherearenanyfactorsthataffectmetherahmanwillcmplywith setstandardscfcareregardingpapsmears. (hgoingrosearch, assesanent,andinterventimsneedtcca1timeifahigherratecf cmpliarbeinseeldmmrtirePapsmearsarflfollcw—upcfab'nrml realltsistobecbtained. 48 WW Areviavoftheexistingliteraturehasbempresentedonthe following areas: early studies, IISADprcject, ‘TaskFcrce, ms TaskForcerecamfledhealthcarefor‘daughters,healthbehavicr, Smanipapanicolaouanear. literaturewasfamdthataddressedthe piysicalab'nmlitiesaniscreenirqprocemresrestfltingfran‘ exposureinuterc. ‘meareainadetpatelyadiressedinthescimtific literaulrewashealthbehavicrspecifictcthcsemexposedtc‘ inutero. mingaaeralwereaddressedregardimhealthbehavicr specifictcscremhgprocenhresardhealthcare. 'mereislackof glalityreseardiamressingthehealthbehavicrcfthe‘pqnlatim astellasmathealthoaretheSdaughterisreceivixg. The researdierinthissttflywillattapttocartrihrtetcthemallbody of scia'ttific lowlene that exists relative to the extent of health carereceivedby‘datqmers. IncnpterIV,theresearchdesign ardnethodsmedtcguidethestudywillbepresarted. CHAPTER IV -- e'n" WAN) 0-- «- My misdeecriptivesmdyecanimdtheemmmidimsmughters receivedthehealthcarerecamdedbytheFederalGoverment'sfl TaskForce. CriteriaforhealthcarecflISdauyrterswere ascertainedthraghareviavofliteramreardestablishedeTask Forceguidelines. 'megoalcfthestudymstcprovideadescriptim ofthednracteristicsoffanaleoffsprirgacposedtc‘inutero, ardtcdescribethepatternandtypecfhealthcarereceivedspecific tomiitoringthepotentialefrectsofueuposureinutem. 'meplrposeofthisdiapteristopresaittheressarchdesignard nethodsthatwereusedtoguidethissttfly. 'Ihedatacollection procedure, cperatiaal definitims, scoring, reliability and validity, analysis of data, arriprotection ofhuman rights will bedescribed. WM Aself-adninisteredqueetimiremsdsvelopedforthisstudy midiirnltfledbothclosed-erfledardqaen-enieditam. Before developing the initial glesticnnaire, questims were formulated specifictcfl1e1985‘laskrbrcerecannelflatialsw.8.neparment of Health and Hanan Services, 1985). These (pastime were designed to aradertheoverallquestimaihessedinmisstudy:1bintextmt m-Wersreceiveflnhealthmremwunm W's Task Force? Thus, the formlaticn of mecific mbqueetiastcbearsweredprovidedthestartingpointfordevelophy thequestimnaire. 49 50 'mesmveydatainthisstuiywerecbtainedusingbothopen-erded andclosed-eniedgdestims. (pen-afiedqaestimswereusedif respaaescotndmtbeadeqntelyanticipated,andtlnntcprovidefor aridrerandfullerperspective,anirespmsefransubjectsonthe tcpicofinterest. 'mefirstdraftoftheqnstiamirewas cmstructedafterthereseardieraapiredsaneideavmatqaestiaeam respmssdloiceswereneededtcanswereadlcfthesubquestions state}. Apilotsuliymscamlctedusirgeight‘daughtersm respafledtoamticevmidiwaspoetedarddistributedinthemllege of Nursing at Michigan State Unversity reqesting their voluntary participatim to fill cut a self-administered cpeetimnaire for a pilotsmdy(seeAppadifoorquestiamire). ‘nlerespaflentwas alsoaskedtoadicamrtsarflsuggestiasregardirythe glestimire’scmstructimandcontent. Attheendofthe questiamire,therespaflentsvereaskadtcgivethearprmdmtetime reededtocalpletethisquestiamaire. 'Iheserespmdentsdidnct participateinthefull—scalestudy. Afterthepilotstuiywascamleted,thequestiotmirewas revised. Pilotstuiycaunmtsweretalmintocmsideratim,asmll assuggestimsmdebyIISActimNatiaialOIganizatimcmslltants. analgesinthefcrmatandorderchuestialsweremade,thatis, sociodamgramicqlestiasweremvedfrmfliebeginfingtotheenlof theqrestimnaire. 'mefomtoflikert-typereqn'nsesmsdiarqed frandleckingmascaletodiedcingmecffiverespmsesina parenthesis. Uscreerdryexaminatimwasdefinedearlyinthe qnstiamireastheparticipantsweremtcertainvmatwasneantbya 51 “scremirgeaminatim. Referencetophysicianinthe qrsstiamairewasmdifiedtoimluiehealthcareprovider. A greetimregardimadmgeinvagirallining/tissuewiththesmne fcmtasusedinthecpeetimaddressingatmomlpapansarwas added. Intheqestimregardingahnmalpapsnear,theglestimwas mdifiedscthattherespafientwasgiventheoptimcfstatingher amrcndmteageoryearofocmrrenceoftheah'mmlPapslear, since the pilot participants felt the optim world make the questim easier toanswer. Amestimwasadiedregardirgmritalstams. Itwas amestedbyapilotparticipantthatthe‘dmxghterstmldcitethe areacfthecamtryinwhidlsheresides;t1m,aquestimwasadded tcspecifyastate of residence. ‘mefinaldraftoftheqnstimnairewascmpletedafterfinal wmmmofthetlmismittee, statistiml cmsultant, andthe Actim Natimal Organizatim consultants. The sunymstlmcmdmtedutilizingthermtdeecribedinthis amber. Wm 'n'lepopllatimmflerca'sideratiminthissunywasfanale offspring caneived between 1947 and 1971 whose mothers took Diethylstilbestro1() foranyperiodcftimduringanyofthe threetrinesters. Acmvmiencesalmlewasdrawnfranthosenenbers ofthepqmlatimwhobela'qedto‘ktimmmarfivhosubscribed toflaeglarterlymslettermlgig. 'Ine‘Actionisan internatimalgrulpwmsistingoflocaldlaptermnadeupof volunteers dedicated to identifying U-exposed perscns, assisting flaninfixflimamrqariatecare,ardprwidirgmdicanselingand 52 referrals as are available. The sanple cmsisted of literate, solidi-mmmnvolmtarilyreqnuedtothe self-administered questionnaire published inthe mm, Issue31,ardwhcnailedbacktheq1estiamire. ‘dmrghtersasscciatedwithlmmtimwereselectedasa smlplefcrthesbxiy,asthisgrmplcrwscftheir‘e)qacsure,were mstrepresmtativeofdauglmershighlyinterestedinfleircaditim, ardtypifyself-careagarts. 'lhesamleforthesudywas self-selected. It was specllated that, if a prtblan in health care msidentifiedinthisgrtupcf‘datgnterswhchadtalmactimtc gaincmtrolandlomledgecftheircariitim,thereeadstsahigh prdaability thattherewasaprdalanintheIIS-daufirters' pwulatim asawhcle. 'mssanpleselectedfcrthesuriyislihelytcrepresent agroupbiasedtowardseekingcare. mblishingthequestiolmairein meidedamearsbymidltcccllectdatama sanpleof‘mufitersmverereceivirqcarefrmavarietycf healthcareprovidersthrulglmttheUnitedStates,thereforemt limiting it to one specific geographical area. A mrprcbability sanple was utilized for its convenience and ecamical advantages. Probability sanpling would be more representative of the populatim, but such sanplin; for this pornlatimwmldregrireagreatdealofreswrcesarfltine; therefore, such an qntim was not available at that tine. InaccordarnewiththelI'SActim International liaism camltant, 2,058 copies of g mm Voice, Issue 31 had been mailed directly to subscribers. Actim’s figure for idartified daughters of the 2,058 plblicaticns mailed in the United States was cpcted as 52 referralsasareavailable. ‘Ihesanple cawsisted of literate, Blglish-spealdngwananvhcvolm’ttarilyrespaidedtcthe sslf-adninistered qestialnnaire published intheW, Isale3l,andwhomiledbacktheq1eetiamaire. HdalghtersassociatedwithActimwereselectedasa sanplefcrthestuiy,asthisgrwplonwscftheir‘exposure,were met represartative of daughters highly interested in their cariitian, andtypifyself-careagaits. Thesanpleforthestudyms self-selected. It has speculated that, if a problan in health care wasidartifiedinthisgrwpcf‘daufiterswhchadtakenactialtc gainoaitmlandlabwledgeormeiromditim,uaereexistsahigh prdaability that there was a problem in the IIS-daugtrters’ pqmlatiai asawhcle. 'mesanpleselectedforthesmdyislflcelytorqaresent agrapbiasedtowardseeldngcare. Publishirqtheqlnetiamairein theWprovidedamearsbywhialtcccllectdatama samleof‘dauaitersvmowerereceivingcarefrmavarietycf tealthcareproviderstlmrjnrttteUnitedStates,thereforemt limiting it to are specific geograrhical area. A napraaability sanple was utilized for its calvaiiaice and ecannical advantages. Prcbability sampling wlould be more rQresa'ttative of the popllatial, but such sanpling for this mlatiaimlldmireagreatdealofreswrcesardtine: therefore, such an optim was not available at that time. Inaccordancewiththe‘Actial Internatialal liaisal casultant, 2,058 cries of W, Issue 31 had been nailed directly to subscribers. Action's figure for identified daughters ofthe2,058p.1blicatialsmiledintheUnitedStateswasqntedas 53 826;!rswever,thiswasmtanexactcamtasthealbscriberwasccdsd asa‘datghtermlyvfimshescidaltifiedherself,tlmsthecamt oouldbehigaer. Aself-selsctiaibiasmyeadstinthisstuiy. 'Ihesanpleuay Wambiasedtomrdseekirgcareasthevolmrtary resparientsweregaierally active, mtivated, arriconcernedfenales. 'BIJS, there is a possibility that the sample forthis studynay differ intheextalttomialitcamctbesaidtcrepresentthepopnatiai. Atctal of 679 amtiarnaireswas received; of those, 670 qrestianaireswererelevantforthesanpleusedinthisstuiy. 0f thosesanplesmtaiteredintcthesuny,threecazsistedcfvmenwhc livedinothercountries,sxhaslsrael, Switzerlarrl,andA13tr-alia. ‘MtimisinternaticnalanihasduptersinAustralia, Canada,“ theNetherlards,aswellastheU.S.A. 'Ihreecftheglestiamaira werelaterespaeesandwerereceivedafterthedatawasenteredinto mtatiai'qISsai". ‘merelainirgmomestiamireswerereumaed withnotatiasthattheqaestianairedidmtarplytcthansirnethey receivedalrger'y(i.e.,hysterectany)pricrtccarereceivedsince 1978. 'mecpestiamairedevelcpedfortheplnposeofthissufiyms basedupmtheguideliressetbythenesmralaskibrceinreferace torecannerdedhealthcarefor‘daughters. 'merecannendedhealth carevasneasmedasthecmpaiartscfscreeningproceduresspecified bythe1985II'STaskarce. Eadiscreafingprocedurewasaddrossedas aquestial(s)inthequestia1naire (seeAmendixD). Respaldaitswere givaladditiaialspacetcnekecmtsiftheyscaiose. 54 Close-eadedquestialswerepresentedinLiJcert-typeqmtials, yes/no greetials, and pre-established alternative qrestials. men-arbd (pastime were also used to elicit additiaual informatim. misinformtiaiwhenanalyzedwaslistedardthenplacedintc catemriesasamrqariate,scthatthisdatacmldbeusedin statistical analysisprocemresardwithcthervariablesinoverall scoring. 'meqnstiamiredajectiveswere: --'lbdeteminealrrazthealthpracticesutilizedby‘daughters. --1bdetemimcmithea1thcarereceivedbyudaughters. --'1bidartifyrespaida1t's socioecamic diaracteristics. W Reqaadartsnailedthecmpletedquestiamairestoapcstoffice box. Capletedqueetiamaireswerefirstcodedbythereseardierartc Migrainmberedcodimsheets. (Ineallcfthecpestiamaires verecodedartothefcrm,theresultsmrethenenteredaltcafloppy diskviaapersaialcmputerusingmlm. Onceallthedatawere arteredusirgmlm,thedatawereuploadedfrmthefloppydisktc theImInainfraneatnidiiganStatemivexsity. Aprintartcfthe data file was than made and a careflll case-by-case verificatiai betweenthedatarileardcodingeheetswasperrorned. Mistakeswere corrected and amropriate statistical runs cmpleted. Whealthcarewasdefinedasthescremirgpmcedure advocatedbythsmSTaskFcrcefordatghtersexposedinutero. wmmcarewasdividedintcsevenareas (subquestials) 55 whichwere (peratialalized as: initiatiai of periodic screening amimtias, screening procedure, enmiratiaa sanedule, indication formrefreqraltscreaaingexamimtiaxs, meofcolposcopy, usecf biqasies, ardbreastexaminatim (seeArpaldixE fora listing of specificqestiaeinfleqestimirethatwereusedtoevaluate eachcfthesevaxareas, smaqaestiaus, thatccnpriserecalmaded Initiatiaxofpericdicscreaiingexamimtiaismsdefinedasthe firstscreamihgexamimtiamdaefcrtlnsellfidaughtersvmcveretcld oftheirexposuredm'ingpberty. 'Ihisinitialscreaiingeuamimtiaa shouldhavebeaidaaebeginiimatageuorattheansetofmenses (mideverwas earlier). aloe the initial examination was dale, periodicscreaiingenminatialsmretobedmeminimllyalcea year. Adleraicetothisguidelinemsneasmedbyreqaalsesto Qastiaisll, 7,9, 21. W Screaiingprocechnesweredefinsdasprmperformedateadi dauarter's examinatial which minimally included a pelvic eaaminatim, cytology test, ani iodine solutiai for cervical and vaginalstaining. Widtescreeningprocedureswereevaluatedby resparsesthuestimlB. W9 'meexaminatiaisdisdllestatesthatUdaughtersverebeing examinedatleastalceayear. ‘mefregdencyoflISeJminatialswas evaluatedbyrespaisestoQuestians9ani11. Tbmnitorifmrefreguartexaminatiaeveredaleforvnnenwith exta'aive atypical epithelial changes, respaises to Quastiams 11 and 12 were evaluated. W Themecfacclposcopywasmttobearoutimprocedureat arery‘examimtiaztutusedarlyinspecificcirumstarnes,sufi1as anabicrnalcytclogy, extersiveorwidespreadqithelial aianges, or intheinitialexaminatiai (forbaselinedata). 'Ibmanitcrifa colposcmywasbeirgutilizedinallcaseswherealrnrmlcytclogywas observed,respa13eth1estia117wasevaluated. 'Ibmaiitcrifa colposcopymsbeingutilizedincasesofextensiveorwidespread epithelial dmges,respa1setoQuestia1 18waseva1uated. Tbmmitcr ifacolposcmymsbeirgutilizedintheinitialexamimtim (for baselinedata),therespansetoQuestia18msevaluated. Wise ‘meuseofabiopsywasmttbbearartineprocedureatevery encaminatial, butusedmly in specific cirramstameswhen irdicntedbyah'ormlpaptests,animentherevasotherevidaicecf significant epithelial alnormlities. To nmitor if a bqusy was beirgutil’izedwmindicatedbyabnormlpaptests,thsrespaiseto Questim 17 was evaluated. To monitor if biqasies were being perfoued whai there was evidence of significant epithelial almcrmalities, the respaisethuestiai 18was evaluated. W 'mefreqaicycfbreasteaaminatiascf‘datgnterswasdefired inacccrdamewiththeclrrartNatiaalCancerInstiurteguidelines 57 (U.S.Wofibaltharflflmnm, 1986). mm breastexaminatialswasevaluatedbyrespalsestoouestials 22, 23, 24. mm wdifyimfactcrswerethosesociodamgraphicandgeneral memmdnracterizemenamreorthesuple. lbdifyirgfactorswereidartifiedbythetfiSdatdrters'respalsestc Mia‘s 1, 2, 3, 5, 6, 19,20, 25, 26, 27, 28, 29, 30, 31. mine Thesubqnstialswereusedancethequestiamaireswerecodedas decisiaivariables. 'merespariartswerereanedtcneeta carbinatiai of respauses to fulfill each subcpestial criteria. Nmimlneasurementcfnetanimtmetwasmed. Ifaresparientnet thesuaqnstial criteria,shewasassigreda"1",otherwisea"0". Fbrexanple,subg.1estia12assessedvhethermdatghtersvere receivingtheappropriatescreaiirgprocedureateadieaminatim which minimally included a thorough pelvic examinatiai, cytology test, ardcervicalarrlvaginalicdirestaining. Inthequestiamaire, Questiainmsusedtoanswersubalestiaiz. Incrderforthe resparienttobeassigneda”1”,slemsthaveanswered"always"to eadaoftheprocecmresrortirelybeimdaeather‘euaminatiais (i.e.,pelvic examination, Papsnear, andiodine staining). (hoethisscoringprocedmemsusedforallmbquestials,itwas determiredlunnanyabqrestimcriteriaeadlrespadartnet.‘meam offlxesescoresprwidedanarstertotteqestim: Tbintartalt m‘mremivefinrmlfilmremrhdbyfinml W'B‘TaskFtIm? 57 (U.S. Department of Health and Hanan Services, 1986). Adherence to breast mimtians was evaluated by respanses to (pestians 22, 23, 24. mm Dbdifyirgfactorswerethcsesocicdenograpnicanigeneral badgrumdquestions which anaracterizethenature ofthesannple. mdifyirgfactorswereidentifiedbythe‘datghters'respanscsto Questias 1, 2, 3, 5, 6, 19, 20,25, 26, 27, 28, 29, 30, 31. m Thesubqnstianswereusedanethequestiannaireswerecodedas decisianvariables. 'Iherespandentswereregiiredtomeeta camimtian of respanses to fulfill each subtpestian criteria. Nanninalneasurenentcfmetarrinotmetmstsed. Ifarespandentmet thesubglestian criteria,shewasassigneda"l",ctherwisea"0". Ebrexanple,subglestian2assessedvmetherfldatghterswere receivirgthsapprwriatescreanirgprocedmeateadnexaminatian which minimally included a thorough pelvic examinatian, cytology test, anicervicalarrivaginaliodinestainirg. Intheq1estiannaire, anstiannwasneedtoanswersubquestianz. Inorderfcrthe respadarttobeassigneda"1",shem15thaveanswered"always"tc eadncftheproceduresrartinelybeirgdaneather‘examimtians (i.e.,pelvic examinatian, Papsnnear,aniiodine staining). a'ncethisscorirgprocemrewasusedfcrallsibquestians,itms determiredhavnenysubquestiaicriteriaeadnrospaflantnetwmeam cfthesescoresprovidedananswertotheqaestian:'1bdutartart mSanjrtersreceivethemalfinmrerea—rhdbytheml covenant's‘l'askliorce? 58 W 'nnereliabilitycfaninstrumentreflectsthedsgreecf cansistencyoraccuracywithvhidianinstrunentmeasuresan attribute. 'nneinternalcasistencyorrmncgeneityaspectcf reliabilitycftheselfnaministeredqrestiamaireusedinthissufly mascertairadbythemefficiant alpha (Grahad'l’s alrinanethod). ‘nlistedmiglewasenployedalQuestiaanhidndealtwiththe procedureswhidnweredanerortinelyateachlISexaminatim. coefficient alpha promised a reliability coefficient that estimated theextanttomidithesulpartscftheinstrumentfieqpelvic examinatian, Pap shear, iodine staining, colposcopy, and biopsy) are eqrivalent intenns cfnneamrirgthecritical attribute, recanmended healthcare. 'Biepnposeofareliabilitytest,withrespecttotheitansin Questian13,istcfindoutiftheproceduresaddressedinthe greetianairetenitobeperfcnnedtcgetherat‘examinatians,crif therearecertaingranpsofprocemrestypicallyperformedtogeflner. ‘Iherangeofvaluss for coefficient alpinaisbetweeno.00and+1.00, thehigl'nervaltesreflectingahigherdegreecfintermlcansistacy. Coefficient alpna was 0.71. Validity of an instrumentwasdefinedby Polit andI-nnngler (1983) asmdegreemmidianir'strunentneasnesvmatitissupposedtc beneasurirg" (p. 394). Inthisstudy,oontentvalidityisthemost pertinent. Cantantvaliditywascancernedwiththesanplirgadequacycfthe cantentareabeingneasured (Politaflmgler, 1983). That is, how r'epresentativeweretlequestianscanparedwithallqnestiasthat 59» miantbeaskedanthistqnic? Simetherewerenccbjectivemethcds for masurirg cantent validity (Polit & Hungler, 1983), cartant validitycmldbejmgedtobeadequatebyeuaminimthemeuiodsused tcdsvelcpthequestiansantheinstrment. Inthissbddy,expertsin thecantentareawerecalledupantoanalyzetheitanstcseeifthey adeqnatelyrmresantedthecartentmiverse. 'lhefornnulatianand selectianofqmtiansfcrimlusianintheinstnmntwerebasedupan attmughrevievoftheliterauneanisetguindelinesbythe‘hsk Force. W212 Severalstatisticaltednniqneswereusedtcanalyzethedata: fregiacydistributias,percentages,neasurescfcentraltadacy, dni-sane, crosstabulatiansandcorrelatias. Eadnsubqnestiaims analyzed using fregiencydistributim, percentages, arrimeasures of centraltandency. Statisticalproceduresusedanthesocicecamicdataircluied fregdacydistrihntians,percartagesarrineans. Crosstabulatiansand ccrrelatiansbetweensocioecamio variables, aswell asbebdeenthese variablesandvariablesinthesubgnestians,weremde. Incnapterv,apresentatiancfthefindingscbtainedinthis studywillbemade. Tableswillbeusedtcaidinillustr'atirgthe resiltscfthisdata. We filerigl'rtsoftherespadentsvereprotectedtlmghadherancetc established standard criteria set forth by the University Camnittee an RessardnlnvclvingtheusecfmmanSubjects (UCRD-B)andalsoby amrovalcfrepresentativescf‘Actian. Amrovalofthehuman 59‘ midrtbeaskedmthistcpic? Simetherem'emdajectivemethods for mean-1m content validity (Polit & angler, 1983), cmtent validityomldhejuipdtobeadeqntebyexamiflmfllemused todevelcpthecpesumsmtheimrt. Inthissuxiy,expertsin thecaltartareawerecalledlpmtoanalyzetheitamtoseeifthey adeqntelyrepresaltedthecmtartmiveme. ‘mefonmlatimard selectimofqdestiasforinclusimintheimtnmmtwembasedupm attmrevialofthelitera‘mreardsetguidelinesbythe‘hsk Form. W Severalstatistiealtedmiqueswereusedtoamlyzethedata: freglercydistrihrtlals,pemartagee,measmmesofcentraltaflency, dli-eane, mtamlatimsaruconelatims. Eadualbcpestimwas analyzed using freqxenzydistrihltim, percentages, animeasures of cattralta'dmcy. StatisticalproeeMresusedmtheeocioeoamicdataimltded freqaucydistrihrtias,peroaxtagesmflmam. Cmestabulatimsard conelatimsbebweeneocioeoormic variables, aswell asbetmenthese variablesardvariablesinflleahmtims,mnade. Incapberv,apresentatimofthefi:dilgsobtainedinthis stuiywillbemde. Tableswillbeusedtoaidinillustratingthe resultsofthisdata. W 'merightsofthezeepaflentswereprotectedfllmghadheraceto established standard criteria set forth by the University Omittee m ReeeardllmolvingtheuseofmmanSubjects (UCRnB)andalsoby malofrqmesentativesof‘utim. Appravalofthemman 60 rigrtsfirotectimprocedureswasgnntedbymmmlatberm, 1986 (seeAmendixF). Amalbyflle‘wtimneeeardlcamittee msalsogmntedforinclusimofthemestiamireinm 1913. Abriefexplanatimofthereseardlsuflyardobjective, voluntary participatim, time involved in participation, instructiora, aniassuranoeeofaraymitywemprwidedinanexplanatimatthe beginning of the self-mustered questiamire. Oanfida'rtiality and araiymityweremintainedasthereaseardlerdidmthavemto thenameeofrespmdents,asthe‘Actimgru1pmiledthemm midlthequestimiremsimluled. flagshiomairewasrettmled toarented-PostOfficebox. Simetherewasmacwsstothenames of W, follow-up of renumdquesticrmirwesmsmtpoesible. W mepmpoeedmeeardidesignhasbemdescribed. 'medatagained bytheanveyreeeardwillaidintheidmtifieatimorpotaitial deficiencies in health practiws of IFS dalgmzem. Data analysis will be pacesented in Chapter V, followed by inplicaticns of the shady realltsanireemmrhtimsformrtherreeeardlaspmpoeedin ChapterVI. CHAPTER V 'meplrposeofthissunywastoexaminetheextenttowhidlms daujrtersreceivethehealthcarerecmmfledbyfllef‘ederal W'S‘Taskmrce. mmisdlapter,datawhid1describethe suflysanpleaniaddzwsthereseardlquestimwillbepresenbed. Achitimal descriptive data, altlnghmtdirectly relatedtothe shadyvariables,willbepmesentedtobroadenthedescriptionofthe sanple. Datapertainimtothemseamhquestimarebasedmthe scores gamted for empliance with predetermined criteria associated witheadlalbcpestim. Severalstatisticaltedmiquesweremedtoanalyzethedata: freqn'lcydistributicns, percentages, measures of central tendency, dli-scpare, crosstabulaticms, anioomlatims. 'Ihedata willbe preseltedasfollows: descriptive datapertaim'Jgtothesanple, and descriptiveardinferentialdatapertainirgtothereseardlqnstim. Presaltatimofthedataisthefocusoftlfisdlapter,whilean ixrtm'pretatimofthemsultsoffllestatisticalanalysesandamxy arepz'esentedinclapterVI. DatafrmtheélO‘datghterswereusedtoanswerthefollmirg researdlqnstim: 'lb‘hatextmtdo‘dnmtemreceiveule mmmmwflnmm'susmmOe? .61 62 W 1. Fbrthose‘danghtersmlomretoldoftheirexpoalreduring puberty, are periodic screening examinatims being done beginning at age 14 oratthe unset ofmenses (whichever is earlier)? Are US daughters receiving the appropriate screening procedure at each exanuinatim whid'l minimlly includes a thorough pelvic examinatim using palpatim, cytology test, and tissue inqoection imllfling the use of axe-half strength aqueos Lugol's solution for cervical and vaginal staining? Are‘daughtersbeingemminedatleastonceayear? Ammfreqmtexaminatia'sbeingdaleformwithextensive atypical qaithelial changes? Is colposcopy beirg utilized in: a. allcasesvmereabnormalcytolcgy(Papanear)iswserved? b. cases of extensive or widewread epithelial changes (such as, squamus metaplasia)? c. the initial examinatim (for baseline data)? Are biopsies being performed ally: a. when indicated by abnormal Pap tests? b. when there is other evidence of significant epithelial almormlities? Ambreastexaminaticraof‘daughtersbeingperformedaccordirq tothewrrentNationalCancerInstitute (NCI) guidelines regarding the freqdency of screening examinations? 'mesociodamgraplicvariableseaminedinthepresentsufiymre age, race, edlcatim, marital status, family incmne, state of residence, health insurance coverage, verification of exposure, ardhcwinformedofexposure. m. 'meageofthesmdyparticipantsramedfrun16to40; thisiscalgruentwiththedefinitimof‘daughtersutilizedinthe mesentsmdy. 'memeanageofthesubjectswastil.7years. 'lheage distrihltimarrlpercentagesareillustratedin'rable 1. 13934. NtmberardPercentageofParticipantsbyAge (n=668). leber of __m am W 16-19 14 2 . 1 20-23 27 4 . 0 24-27 43 6 . 4 28-31 ‘ 190 28. 5 32-35 275 41 . 2 36-40 112 41.3 668* 100 . 0 *Variatimbetweenthesmdysanple(n=670) andthetotalmnberof respmsesisduetomanswer"req3msos. m. 'Ihe majority of participants in this study, 662 (99.0%) , werewhite. 'meranainilgparticipantsinthisstudycmsistedof: 2 (0.3%) black, 1 (0.1%) American Indian, and 4 (0.6%) other. 64 m. 'Ihe majority of participants in this study, 665 (99.3%), were high sdlool graduates and of these, 481 (72.3%) had a famyearcollegedegreeorhigher. 'Ihemeanedncatimal level ofthe sanplewas16.4year~s. hemmerardperoartageofuaemdaughtsrs byyearsofedlmtimcanbesemin'rablez. m3. MnflaerardpercattageofParticipantsbyYearsofEducatim (n = 670) . Ntmber of W Rm PM W 10 ‘ 1 0.1 11 4 0.6 12 40 6.0 gallsge 13 46 6.9 14 65 9.7 15 33 4.9 16 181 27.0 graggatslagnggl 17 67 10.0 18 107 16.0 19 ~ 40 6.0 20+ .86 ._1219 670 100.0 W. 'medistrihrtimardpercentageof‘daughters bymritalstatusnaybeseenin'l‘able3. Offllewuneninthisstudy, 468 (70.0%) were married. 65 131219.1- nmaerardpercentagecf Participantsbymrital Status (n = 670) . Nunber of .....nariralistatns 899990999 Percentage Single 163 24.3 mrried 468 70.0 SQar-ated 9 1.3 Divorced 29 4.3 Widowed _1 Jr}. 670 100.0 W. Yearlytotalfamilyinccmemscbtainedfrm653 respaflarts. 'medistrihxtimanipercentageofrespadentsaccording toinccnecanbeseenin'rable4. Ofthewunenresparlirg,525 (80.4%) reportedafamilyincuneof $25,000andabove, andof these, 281(43.0%)hadatotalfamilyirnmleof550,0000rmre. 132125- Nmber and mrcentage of Participants by Yearly Family Inccm (n = 653). Number of ___m M m less than $9,999 15 2.3 $10,000 - $14,999 17 2.6 $15,000 - $19,999 30 4.6 $20,000 - $24,999 66 10.1 $25,000 - $49,999 244 37.4 $50,000 or more 2g, m 653* 100.0 1|vVariatimbetweenthestudysanple (n=670)andthetotalnmberof respmsesisdueto"manswer"resporses. 66 W. In this sanple, 657 (98.2%) of E‘s-exposed daughters have health insurance ad of these, 479 (72.9%) have health insurance that covers their [IS emminatims. W. 01? the sanple in this study, 165 (24.6%) were fran the Pacific coast States, 153 (23.6%) fran the Middle Atlantic States, 125‘ (13.7%) traummestern States, 105 (15.7%) fran Saxthern States, 62 (9.2%) franNav Bylaw States, 38 (5.7%) fr'cm Sarthwwtern States, 12 (1.3%) fran Rocky Mcmtain States, and 5 (0.7%) frcm Alaska arr! Hawaii. Mar to Table 5 for the distrihrtim arripercartamofparticipantsbystateofresidane. W. 0fthe669participantsinthestudywho W to “-exposure verificatim, 590 (88.2%) reported that they wramtheyvereamdaughter, 79 (11.3%) reportedthey tinighttl'leymreexposed, but itwasnotverifiedbymedical recorth. “maskediftheyhadevertriedtodrtainmedicalrecords to verify exposure, 453 (67.7%) respalded "yes". mm. PmtheIISdaughterwasinformedthatshe msexposedto‘wasascertaimdforeadlparticipantinthesuldy. 'menmberanipercartageofparticipantsaccordingtothemrnerin whidltheywereinformdoftheirsexposureisincluiedini‘able 6. 'Ihe mjority of participants in the study, 436 (65.1%) were informed of their expoalre by their anther. Descriptive firdixqsabwtthesmdypogllatimmrepresentedin the previous sectim. 'me description of the sample incluied the following sociodanograplic variables: age, race, educaticn, marital status, family ixucane, state of residence, health insurance coverage, 66 W. In this sample, 657 (98.2%) of [IS-exposed daughters have health insurarm and of these, 479 (72.9%) have health insurance that covers their ms examinatims. W. 0f the sample in this study, 165 (24.6%) were fran the Pacific (hast States, 158 (23.6%) frcm the Midile Atlantic States, 125‘ (13.7%) franMidwestem States, 105 (15.7%) from Scuthern States, 62 (9.2%) franNew England States, 33 (5.7%) from Southwestern states, 12 (1.3%) frun Rocky homtain States, and 5 (0.7%) frcm Alaska ard Hawaii. Refer to Table 5 for the distrihltim and percentage of participants by state of residence. W. Ofthe669participantsinthesu1dywho rcsporded to S—exposure verificatim, 590 (88.2%) reported that they lawforametheywerealISdaughter, 79 (11.8%) reportedthey tlnlgtrttheywereexposed, but itwasmtverifiedbymedical records. Maskediftheyhadevertriedtoobtainmedicalrecords to verify exposure, 453 (67.7%) respcnded ”yes”. W. mun‘daughterwas informedthatshe wasexposedto‘wasascertainedforeadiparticipantinthestniy. ‘nlenmberaIflpercentageofparticipantsaccordingtothenamlerin midltheyvereinfornedoftheirmSexposmeisimluiedinIable 6. ‘Ihe majority of participants in the study, 436 (65.1%) were informed of their exposure by their anther. Descriptive firdirm about the study populatim were presented in the previous section. ‘Ihe description of the sanple included the following sociodanographic variables: age, race, educatim, mrital status, family inccme, state of residence, health irsurance coverage, 67 M. WampercentageofparticipantsbyStateofResiderne (n = 670). Number of W W W: Oalnecticxt 21 3.1 Maire 3 0.4 Massachusetts 33 4.9 New Hanpshire 3 0.4 lbode Islam 1 0.1 Vermont 1 0.1 W: N84 Jersey 33 5-7 Nev York 87 13.0 Pennsylvania 33 4.9 W3 031m 1 0-1 District of Colunbia 7 1. 0 Florida 13 1.9 Georgia 15 2.2 Kamldcy 1 0.1 Icuisiam 3 0.4 Marylard 26 3.9 North Carolina 11 1.6 Scuth Grolina 1 0.1 Tennessee 5 0.7 Virginia 20 3.0 West Virginia 2 0.3 W: Illinois 18 2-7 Irdiana 2 0.3 Iowa 8 1.2 Kansas 7 1.0 Michigan 31 4.6 Minnesota 18 2.7 Missouri 6 0.9 Nebraska 3 0.4 North mm 1 0.1 (1110 21 3.1 Wisccnsin 10 1.5 W: Colorado 8 1.2 ‘ Maltana 2 0.3 Nevada 1 0.1 Utah 1 0.1 W: Arizona 5 0.7 Nev Mexico 2 0.3 Oklahaua l 0.1 Texas 30 4.5 W: California 143 21.3 Oregon 3 1.2 Washingtm 14 2.1 Alaska 4 0.6 Ihwaii __1 _Q,; 670 100.0 68 meg. umberaIflPercaltageofParticipantsbyMarmerinmidl Informed cfu'ZSEbcposure (n=670). Ntmber of ___Infm W m PM letter or Rm (211 38 5.7 m 436 65.1 Physical lamination Diagnosis 159 23 . 7 Father 7 1.0 Relative (Other than mther or Father) 5 0.7 Perscnal Inquiry 16 2.4 New Media __2 _l.:A 670 100 . 0 verified exposure, and how informed of exposure. An examination of the descriptive statistics showed that the nejority of subjects in the sanple cmsisted of white, middle to upper class, college-educated, married fanales who were covered by health insurance. W Sociodenograp'lic variables were cited as extraneous variables in the study. ulltiple regressicn revealed that there was no Significant relatimshipbetweentnvoftenaIISdaughterseesahealthcare provider for examiratims and her educational level, total family Forthcse‘daugnterswhoweretoldoftheirexposureduring puberty, are periodic screaming examinations being dame begilmirg 69 atagel4oratthemsetofmalses(midaeverisearlier)? 'memanageatmidithe‘daughtersinthissanplelearned theywereexposedwaszo.5 years. Ofthesanple (n=667),80 (12.0%) respaflentsleanmedtheymrea‘datqnteratuyearsofageor W- Ofthesanple (n=665), 640 (96.2%) Sdaughtershada first “screalingexaminatim. Ofthosedaugnterswhostatedtheageat miditheyreceivedtheirfirst‘scremingeaminatim (n=623), 54(8.7%)hadhadtheirfirst‘scremingexaminatimat14yearsor ycmger. hemanageofthosewlnhadtheirfirst‘screening amimtimmleJ years. Inthisstudy, 528 (83.1%) “daughters reportedhavirgascreeningexaminatimdmeatleastmceayearmce theyhadtheirfirst‘screerfimexaminatim(n=635). Ofthe sanple (n- 669), 666 (99.6%) hadorpreviouslyhada nestrualperiod. 'memeanageatmidlthissanplestartednenses was 12.3 years. 0fthe80 (12.0%) mdaughtersmoweretold of theirexposureduringpmerty, 23 (30.3%)hadperiodicscreenin; examinatialsdmebegirnirgatageuoratthealsetofmenses (whidlevercaneearlier). W Are-“daughtersreceivingtheappropriatescreeningprocedure at each examinaticn which minimally includes a thorough pelvic examinatim using palpation, cytology test, and tissue inspection inchfling the use of one-half strength aqueous mgol's solutim for cervical ard vaginal stainirg? In this stuiy, 599 (95.5%) daughters reported having a pelvic examination at each screening examination (I) = 627); 621 (97.3%) 70 rqaortedhavirq a Pap anear (n=- 638): and 144 (24.7%) reported always having’iodimstainingm-Sm). ‘medistributimardpercentageof participantsaccordimtoeadlpartianarprccedneardfregdencycf thisprccemreisillustratedin'l‘ables 7-9. ally 133 (20.8%) dmghtersinthisshflywhohad‘screenirgexamiratias(n=640) werereceivingtheamrrpriatescremirgprccedmeateadiemmimtim which minimally included a pelvic emminatim, cytology test and tissueinspectimmidiinclmediodimstainingofcervicalard 193213.2- NmberandPerca'rtageofParticipantsbyFrequencyofPelvic Daminatims at Screening Emiratims (n = 627) . Regency of Nmber of W m Fem Always 599 95.5 Satetines 18 2.9 Never 1 0.2 Daft m __2 1,5 627* ' 100.0 *Variatimbetweenthesbxiysanple (n=670) andthetotalnmbercf respmsesisdueto"noanswer"respmsos. W. Wam‘PercentageofParticipantsbyFrequercyofPap SmearsatIISScremirgExaminations (n=638). Freqlency of Nunber of Mr W W. Always 621 97.3 Sometimes 14 2.2 Never 2 0.3 Dm’t Know _1 _Q=Z 638* 100.0 *Variatimbetweenthesuldysanple(n=670) anithetotalmmberof mismatc"manswer"respmses. 70 rwortedhavirqapapsmear(n-638):and144 (24.7%) reported always havingiodinestainirg(n-583). ‘medistrihltimardpercentageof participantsaccordingtoeadlpartimlarprccedneardfrequacyof thisprocedureisillustratedin‘rables 7-9. mly133 (20.8%) dalgtrtersinthissunydlohad‘screenimexaminatims(n=640) verereceivixgtheamrqariatescremingpmcedmeateadlexamimtim which minimally included a pelvic eaalniratim, cytology test and tissue .inspectim which included iodine staining of cervical and liable]. NLmberardPerca'rtageofParticipantsbyFreqmacyofPelvic Baminatims at Screarirg Demimtims (n = 627). Frequency of Number of W W Pam Always 599 95.5 Sanetimes 18 2.9 Never 1 0.2 Dm't Know _2 _L_4 627* ‘ 100.0 *Variatimbebveenthesmdysanple(n=670) andthetotalrunberof respmsesismleto"manswer"responses. W. Nmuberarrl‘PercentageofParticipantsbyF‘reqalcyofPap Snearsat‘ScreeningExaminations (n=638). Freqaency of Nunber of M m PM. Always 621 97.3 Sanetimes 14 2.2 Never 2 0.3 Dal't Know _1 __Q_.2 638* 100.0 *Variationbetweenthestuiysanple (n=670) ardthetotalnmberof respmsesisdueto"manswer"respa1sos. 71 132112. Nunberarfl‘PercaltageofParticipantsbyFrequencyorodim StainirgsatlISScreenirgEaminatiora (n=583). Fromm-of Ntmber of W W W Always - 144 24.7 Smetimes 233 40.0 Never , 126 21.6 Dm’t Rho" .852 .1312 533* 100.0 *Variatimbetmea:thestuiysanple(n=670) andthetotalmnberof respoaesisdaeto'hoWrespaaes. W Aredeaughtersbeingeiaminedatleastoraeayear? Inthisstudy(n-643), 15 (2.3%) Udaughtersarepresently seeingalaalthcareproviderfor‘examimtiaamoreoftenthan everysix maths, 276 (42.9%) everysix marths, 312 (48.5%) cncea year, 26 (4.0%) noreflendreyearapart, 7 (1.1%) erratic, and 7 (1.1%) reportedtlaymla'qerseeahealthcareproviderforlm examilntia‘a. Inthis study (n= 635), 523 (33.1%) daughters reportedthattheyhadascreeningexaminatimdoraatleastalcea yearaftertheyhadtheirt’irstseuamimtim. Wm Aremrefreguentexamimtiaabeingdaaforwmenwith exteraive atypical epithelial dlanges? Offlasemmnwerecmrtlyseeimataalthcareprcvider morethanomeayear, the followirqreasaa (indicative of eutetaive 72 atypical epithelial charges) were reported: 110 (21.7%) - abrarmal Pap sneer, 42 (3.2%) - resilts of iodine stainilg, 33 (17.3%) - results of colposcopy, 54 (10.6%) - results of biopsy, 12 (2.4%) - adenosis, and 14 (2.8%) for follow-up (i.e., carcincna in situ, past history of cancer, hysterectany). Inferto'l‘able 10. 0fthose daughterswho statedtheywereseeirgalaalthcareprcvidereverysixmontlaor mrefiequarttlanarerysixmrtla, oneoftheabove—statedreasons was given in 320 (63.0%) of 508 reasms given. In this study (n= 664), 399 (60.1%) daughtershadheentoldhytheirhealth careprcvichrthattheyhadhaddlalgesintheirvagiml lining/tissue (i.e., withelial changes, dysplasia, adenosis) . Of the entire sanple (n = 670), 175 (26.1%) daughters were receiving euaminatiora more freglent than mce a year for extaaive atypical epithelial dialges. W Is colposcqay being utilized in: a. allcasesvhereahnormalcytology (Papsmear) iscbserved? b. cases of extaaive or widespread epithelial changes (such as, W nataplasia)? c. the initial examinatim (for baseline data)? Colposcopiesmremtutilizedinallcasesvmereabrarmlpap snearswereobserved. Anah'nmlPapalaarhadbeenreportedinZBO (42.3%) dalghters in this shfly (n = 662). Of those falales, 26 (9.3%) Wacolpscqoy inall caseswhereabnornal cytologywas cbserved. Chargesinthevaginal liniJg/tissuehavebeenreportedby399 (60.1%) NS daufi‘rters in this sttxly (n = 664). Of these fatala, 62 (15.5%) reported a colposcopy beirg utilized in cases when extaaive 73 159.19.19- NmberandPeroentagebyReasmforSeeirgHealthCare Providernore'lhanalcanear (n=508). Nunber of m W Annual Pap sleaz- 110 21.7 Results of Iodine Stainirg 42 8.2 Results of mlposcopy 88 17.3 Resists of Biopsy 54 10.6 Wis 12 2.4 Wis 8 1.6 Estrogen W ‘merapy/Mempause 4 0.8 Followup — carcinma-in—situ 14 2 . 8 Gear-a1 GYN Prdalalair 25 4.9 Infertility 35 6.9 Monitorilgof ms Expoalre 75 14.8 Other Health Problena (other than GYN related) 5 1.0 Berscnal Preference/Concern 21 4.1 Prenatal Care .15 Jr? 508** 100.0 * BB, watrual cranps, cervicitis, ovarian cyst, cervical staasis, ovarian dysftmctim, uterine polyps, fibroid growth, cervical scarring, cervicalgrowtla, STD (i. e., herpestype II, cadylme), vaginal bleeding, recurrentvaginitis ** Variatimbetwemttasbxiysanplem-WO) andthetotalnmber crwidespreadepithelialdlalgesweredaserved. 'nameanageofthe IISdalgnterswtarQortedaharmlPapsmearsarddargesinvaginal linixg/tissuehas28.8yearsand28.5yearsofagerespectively. 74 Acolposccpywasutilized inthe initial examinatim for baseline data in 430 (77.7%) of the sanple (n = 613). Of those fanalesinthesamlewtareportedeverhavirgaiscreenirg examinatim (n - 640), 480 (75%) reported a colpscopy being done on their first or secari eiaminatim. W Are biopsies being performed ally: a. when iniicated by W1 Pap tests? b. wilen there is other evidence of significant epithelial Wities? Of the 230 (42.3%) s‘mrtersmo reported atmormal Pap smears (n = 662), 18 (6.4%).reported a biopsy beirg performed when indicated byatmomlcytology. 0fthe399 (60.1%) “daughterswhoreporteda dlaxge in vaginal liniJg/tissue (n = 664), 29 (7.3%) reported a biopsy beirg perfomed where there was evidence of significant epithelial abnormalities. M5311 Arebreastexaminaticra of dalgtrtersbeingperformed accordirgtotlawrrentNatimalCamerIratituteguidelines regarding the freglaay of screening examinatiora? 0f the sanple in the steady (n = 670), .134 (27.5%) reported performilg monthly: 396 (59.1%) reported not performirg SE routinely (but medial occasim); 87 (13.0%) reported not doing SE mmthly: and 3 (0.4%) did not answer the glestion. In the sanple (n - 670), 616 (91.9%) reported that the daughters health care providereuaminedherbreastsat leastonceayear; 30 (4.5%) rqaorted notrcutinelycnceayear; 21 (3.1%) reportedthattheirhealthcare 75 widerdidmtmimttaeirbmastsmayear3am3(o.4%) did mtreplytnthisqmtim. Amusbeenperfomdatleastminlssamn) of fitment-667); 'meageatmidithesewmmreceiveda ngedfmlatowyeam. unmanageofmefirst Wm 30.7 years,ard31.7yearsard36.3yearsfor adiitidnlWieszespectively. 'menmberandpememzageof participmtsbyagefimmaflwwasperfomdmsreportedin Tablell. mu. mmmageofparticipantsbymflm Wmmrfomd. NW Of 6: fi%- ‘T‘E‘Qfiflgfi 168 than 20 6 0 0 3.9 0.0 0.0 20 " 24 ~ 18 1 0 11.7 6.2 0.0 25 - 29 29 3 V 0 19.0 18.8 0.0 30 - 34 - 52 8 0 34.0 50.0 0.0 as - 40 4.8. .4. .1 .114 32.9 191.12 153+ 16 3 100.0 100.0 100.0 *Firstuamngraniy (n=153) *WWUI" 16) ***'mirduanmgra111y(n= 3) +Variat1mhememthenmbermoetateduaatmeyhadammgramy dcne(n-158)ardthenmberofreponsa£byagevtmmmngraphy wasperfoxmdisdueto"manswer"mspmestoage. 75 praviderdidrntamimflreirbreastsacaayear3aId3(o.4%) did mtreplytothisqxestim. Amylasbemperfonmdatleastaweinlseamn) of fliesanple(n-667)~. ‘meageatmidxttaemreceiveda Wmmdfrmmtowyears. nemanageoftlefirst Wmmfl years,am31.7yearsarrl36.3yearsfor mummierespectively. ‘menmberandpetca'rtageof participantsbyaqemmaflwmperfomedmreportedin Tablen. 1921;11- Ntnb'erardPercentageofParticiparrtsbyhgeflm Wmhrfomd. Nmflaer Of a %- TWE‘ 1.58 than 20 6 0 0 3.9 0.0 0.0 20 " 24 ‘ 18 1 0 11.7 5.2 0.0 25 "' 29 29 3 I 0 19.0 18.8 0.0 30 " 34 - 52 8 0 34.0 50.0 0.0 as - 4o _4§ .4 ..3 .214 .2242 11m 153+ 16 3 100 . 0 100. 0 100 . 0 *Fimtmmgramy (n=153) *ngrayxy(n= 16) ***‘mirdfla1mgrap1y(n= 3) +Variatimbetwea1thennflaermostatedthattheyhadamnmgran1y daze(n-158)ardthenmberofmpmsesbyagemenmnography wasparfamdiscmeto"manswer"mtoage. 76 'Ihethxaeleadingreasmsforhavirgafirstmnmgmfilydale unreported”: forbaselim,fihucocysticbreastdisease,ard amicias Imp,mid1wasreportedas42 (26.9%), 39 (25.0%), and36 (23.1%) respectively. Ofthemwhohadmmthanalemmgmmy dme, fibrocystichreastdiseasewasthereasmgivminlo (58.8%) of flmemmomdaseoaflmgmfiw,am2(50.o%) ofthosewho hadathinimmograply. 'nledistrihxtimaIdpexcartageof participantsbyreaslmformnmgraphycnnbeseauin'rablelz. m. umberarflPercemzagebyReasmforrhnmograply. number of Baseline 42 0 0 27.1 0.0 0.0 Breast Discharge/Pain 15 1 0 9.7 5.9 0.0 Exposure 3 0 0 1.9 0.0 0.0 Employment mysioal 1 0 0 0.6 0.0 0.0 Enlarged Lynph Node I 2 0 o 1.3 0.0 0.0 Fibrocystic Breast Disease 39 10 2 25.2 58.8 50.0 Family History of Cancer 8 1 1 5.2 5.9 25.0 Femoral Preference 3 1 0 1.9 5.9 0.0 Reoomerded by physician ‘ 6 o 0 3.9 0.0 0.0 9333131013 11"? _3_5 .5 _l 1.3.2 .2345 .2542 155+ 17 4 100.0 100.0 100.0 *First Way (n = 155) “Sean: Mannlogramy (n = 17) ***‘mird Mamgramy (n = 4) +Variatimbetweenfl1enmberwtnstatedthattheyhadanmmgmfi1y dme(n=158)ardthemnwerofmspmsesbyreasmw1y II; III II OOIQIO ,5 77 Breastaminatialsof‘dmagtrtemwerebeingperfomd zegaxdirgfllefreqnlcyofscn'emingexamimtionsinlw (21.9%) of thissalple. W 'lbvtntexbanzdo‘daxfitemremivethehealthoare Mbyflemlmlt's‘MM? 1barswertheoverallrwearohcpestim,thesuflysanplewas firstbrdcendownintoeightgrwpsaooordjngtoaombinatimof tm'eedlaracteristics: metherthedaughtexsfaudoutaharttheir exposuedrirqpbertmvhethertheyhadexperianedanabnmlmp smear, axd/orwhetheruleyhadeaqaerialoedqaithelialdiames. Each grwphadmlevantalbqnstiasthatdescribedmthealfllcammeded tobereoeivedbytheIISdaughterstooonfomtotheFederal Govmt's‘mskmreoamflatiors. RefertoAmerdixE. The nmber and ombination of relevant subquestials differed for eadlofflleseglnlpsofdeaughtem. Forexanple,vmenvmolearned oftheirelqaosmeduringplbertyammdidnotexperiernean ahnrnalPapsmearorepithelialdIangawemrefenedtoasGrmpl. mmleanledoftheireuposumduringplbertyardvmohadan ahnmlPapalaarhItdidmtexperienoeepithelialdlargeswere referredtoascrulp.2. erplhadSsuqumtimsvdfidlwere mlevanttofllehealflicaretheywemtomoeivetoomplywiflltheir lEecpoalre,vhereastu1p2had8aIqumtionsthatapplied. 'meiefoxe,tomderstandmatextentofzeoomerdedhealmearemey were receiving, each group was analyzed irdividually before an overall extmtcmldbeaomratelydeterminedforthesanple(n=670). 78 cftheudaughtersomprisihgoxmpl (n=17), 10 (58.9%) received50.0%crmzecfthehealthcarereccmnendedbytheiederal W'smmm, and? (41.1%) received 1esethan50.0%, asshcwnin'lablen. Ofthe‘daugtrtetscmprisirgcrwpz (n=-2), 2 (100.0%) received leesthan50.0% ofthehealthcare zecameniedbytheFederalGovernnent's‘Taskarce,asstmnin 'I‘able14. m. WardPercentageofGrcmplparticipantsbymtentof Recamamdedl—IealthCazeMet(n=17). umber of PeI'cent of Percent of o of 5 0.0 - 0.0 1 of 5 20.0 3 17.6 2 of 5 - 40.0 4 23.5 3 of 5 60.0 8 47.1 4 of 5 7 80.0 2 11.8 5 of 5 ‘ 100.0 .: .09 17 100.0 Grulp3omsistedcfm8datghtexswholeanledoftheirexpcalre dimingplbertywhcdidmt'haveanahlcmlpapsnearbutdidhave epithelialdlanges. Ofuelrsdamtexsomprisjngthisgmp (n=22), 8 (36.4%) received 50.0% ormore oft‘nehealthcaxe recmnexdedbytheFederalGovenwrt'slISTaskForce, andl4 (63.6%) received leesthan50.0%, asshcwnin'rable 15. 79 mm. NmberaniPercentageofexulpzmrticiparmsbymtmtof Whalthcraremt(n=2). numerof Peleent of Percart of gmmug.___4ng&es away awe. 0&8 om - do 1&8 us - mo 2 of’8 25.0 1 50.0 3&8 ~ no 1 mm 4&8 we - do 5 of 8 62.5 - 0.0 6&8 . mm - m0 7&8 ms - m0 8 cf 8 100.0 _: __g.g 2 1mm 133713.15- mmeraIdPementageomeup3ParticipantsbyEb¢entof mcallnendedflealthCareMetm=2m. mmum Mde Mmm& swung. cugxes HEEM amL. 0&8 . om - mo 1&8 n6 1 m5 2 of 8 25.0 5 22.7 3 of 8 37.5 8 36.4 4 of 8 50.0 6 27.3 5 of 8 62.5 2 9.1 6 of 8 75.0 - 0.0 7 of 8 _ 87.5 - 0.0 8 & 8 100.0 _: __0.9 22 100.0 80 erp4cmsistedofll$daughtemvhcleanledoftheireutpcsure durixgpbertymlohadanahmmlpapsmeararflhadepithelial changes. Ofthe‘daughterscmprisingthisgrulpm=25), 25 (100.0%) received lessthanS0.0% ofthehealthmrerecumafledby fleFederalerenwt's‘TaskForce,asshcwninTable16. W. Wardpezcenbageofcroup4Participantsbymtentof Wmalthareuet(n=25). Nmber & percent of percent of o of 10 0.0 - 0.0 1 of 10 * 10.0 1 4.0 2 & 10 20.0 8 32.0 3 of 10 30.0 13 52.0 4 & 10 40.0 3 12.0 5 of 10 50.0 - 0.0 6 of 10 60.0 - 0.0 7 of 10 70.0 - 0.0 8 of 10 80.0 - 0.0 9 & 10 90.0 - 0.0 10 of 10 100.0 _- _0_._0 25 100.0 GrruPScmsistedoflISdatghterswholeanledofflIeirexpcalre afterwbertyarddidmthaveanahlcrmalpapsmearorepithelial changes. Offlledeatghtetscdml-isingmisgruxp(n=95), 49 (51.6%) received 50.0% or more ofthehealthcarerecmmelfledby flleFederachvennent’SIESTaskFozee, and46 (48.4%) received less than 50.0%, as sham in Table 17. 81 W. WardPercartageomeupSParticipantsbymtentof Reccmnendednealthmrewt (n=95). Nmber of ‘ Percent of Percent of W W W m 0 of 4 0.0 14 14.7 1 of 4 25.0 32 33.7 2 of 4 50.0 36 37.9 3 of 4 75.0 13 13.7 4 of 4 100.0 _: _Q_,_Q 95 100.0 Gralp6cmsistedof‘daughterswhclearnedoftheirexpcsure afterpibertyardhadanabnomalpapsmearhxtmtepithelial changes. OfthelISdatgtrterscmprisixgthisgroup(n=30), 1 (3.3%) received50.0%ormreofthehealthcnrerecamerdedbythe Federalocverment'ss'raskrome, and29 (96.7%) received leesthan 50.0%, asshcwnin'rable 18. W. NmberarflPercentageofGroup6ParticipantsbyExtaxtof RecannerfledHealthCaxeMet(n=30). Nimber of Percent of Pawn: of 0 of 7 0.0 4 13.4 1 of 7 14.3 6 20.0 2 of 7 28.6 10 33.3 3 of 7 42.9 9 30.0 4 of 7 57.2 1 3.3 5 of 7 - 71.5 - 0.0 6 of 7 85.8 - 0.0 7 of 7 100.0 __: __Q_._Q 30 100.0 82 Grqu7cmsistedofUdatghterewhc1ean1edoftheirexpcalre afterwbertyanddidmthaveanabncrmalpapatearbutdidhave epithelialdianges. Offliefidaughterscamrisirgufisgroup (n-113), 13 (11.5%) received 50.0%ornnreofthehealthcare recala'dedbytheFederachverment'sIISTaskFcrce,ard100 (88.5%) received leesthan50.0%, asshown in'Iable 19. 3912.12- NmberaniPercartageofGraip7ParticipantsbyExtentof Wmalthmrenetm=1l3b Nlldoer of Percent of Percent of sziisndkilia: CIiia:jalea;______Jaszirarnr $§EEI§L_ 0 of 7 0.0 4 3.5 1 of 7 14.3 18 15.9 2 of 7 28.6 41 36.3 3'of 7 42.9 37 32.8 4 of 7 57.2 9 8.0 5 of 7 71.5 ' 4 3.5 6 of 7 85.8 - 0.0 7 of 7 ‘ 100.0 ‘__: __g.9 113 100.0 Grmchmsistedof‘daIghterswhcleamedcftheirexpcwre afterpubertyardhadanabncrmalpapanearandhadgithelial diarges..0fthe‘daugtrtersoalprisimthisgrulp(n=199), 32 (16.0%) received 50.0% ormreofthehealthcarerecmmetfiedby theFederachvermrt’slISTaskForee, andl67 (84.0%) received less than50.0%, asshcwninTable 20. 83 m. mnberarflpercartageofcroupBParticipantsbymctentof RecumdedflealthChreHet(n=199). Huber of Percent of Percent of W Grim M 5.815219— 0 of 9 0.0 8 4.0 1 of 9 11.1 20 10.1 2 of 9 22.2 49 24.6 3 of 9 33.3 60 30.2 4 of 9 44.4 30 15.1 5 of 9 55.5 15 7.5 6 of 9 ‘ 66.6 8 4.0 7 of 9 77.7 5 2.5 8 of 9 88.8 4 2.0 9 of 9 100.0 _; __0_,_Q 199 100.0 Ihacoordamewiththerederaloovenment'smraskroroe,the extartoftaalthcarereceivedbythesanpleinthissufly (n=503) isreported as: 113 (22.4%) received 50.0%or'mcreofthe recannendedhealth care,and390 (77.6%) received lessthan50.0% of therecmuendedhealth care. 0ffl1esanp1e,30(6.8%)didmtreceive anyoftherecamendedhealthcare;0(0.0%)metallofthe recamafiedhealthcare. RefertoTableZlfcrtheeutentof recdnnendedhealthcaremet. ‘Iherewere167‘daughter'svmcwere mtacccuntedforinthefiraldetemimtimoftheextentof recmnerdedhealthcaremet,dnetoanittinganswereth1estimsin theqestiamirethatwerecriticalindeteminimvmetherormta Specificaspectofherhealthoarewasreceived. 84 m. nmeraIfiPercetltageof‘leglrter‘sinttieStInyby Emeritafmcamerdednealthczreuetm=50n Percartchecamerfled Percerrtof M W 86.891.9— 0.0 - 25.0 174 34.7 26.0 - 50.0 258 51.2 51.0 — 75.0 60 11.9 76.0 -1oo.0 11 2.2 505 100.0 mtapresartatimoftbereseardlquostimanisubcpestimsves describedintheprevialssectim. Inamry,cfthe‘datgtrters waveretoldofflieireicpcslredimir'gplberty,30.3%rladpericdic screeningacamimtiaadcmebegimfimatageuoratthemsetof maesNhidxevercameearlier). Only 20.8% of‘daugl'rtersinthis shldywlnhad‘screeningexamimtiaiswerereceivingthe wiatescreenirgpmcedmeateadlexamimtimmidlminimlly incluied a pelvic examinatim, cytology test, and tisale inspection midlimltdediodirestainirgofcervicalarfivagimltisales. In thisstudy, 93.7%of3daughtersrepcrtedthattheywerepmesa1tly seeilgahealthcareproviderfor‘examinationsatleastornea year, andB3.l% offiSdamhtersrepcrtedhavingascreening examimtimdcneatleastcmceayearafterhavirgtheirfirst aminatim. Ofthose‘dauglrtersvmoveretoldbytheirhealth careproviderthattheyhadhaddiangesintheirvaginal lining/tissue, 26.1%were receivirgmre freqient examinaticns for exteraive atypical epithelial changes. A cclpcsccpy was utilized in 85 9.3%of‘daugtrtersinallcaseswhereahnmlcytologywas observed. Acolpcscqpywasutilizedinlifiofcasesmlere extensiveorwidspreadepithelialdnarqeswerewserved. A oclpcscqyywasutilizedintheinitial‘acaminatimforbaselim datain77.7% ofthesanple. Abicpsywasperfornediné.4% of“ mmmicatedbyabnmlpaptests. Ofthedmighterswho rqcrtedadnrqeinvagirallinirq/tissue,7.3%repcrtedabiqasyms perfumed where there was evidence of significant epithelial abbrmlities. Breasteamiratiaeof‘datglrterswerebeirg performedacccrdingtothemrrentNCIguidelinesregardingthe freqaacyofscreenimexamiratiolsinn.9%ofthissanple. Inthis suflysanple,itwasdeteminedthatlessthan25%of‘dauglrtere verereceivirq50.0%ormreoftherecannendedhealthcarein accordancewiththehderalGovenmrt's‘Taskameqridelirns. ’ ' .Slmry Inthissectim,dataresultsandana1yseswerepresented. In ChapterVI, asumarYandinterpretatim of findings, andinplicatims for rursirq practice ard educatim £11ng with recamendatims for futurereseardiwillbeptresarted. cusp-ran v1 mam, W,ANDWIGB m Amryamlinberpretatimofthefindjngsarepresentedin ChapterVI. ‘Ihissmmaryaniinterpretationincludeadiscussimof filescciodamgrarhic-dlacteristiaofthesuflysupleanihavthese variablesmayhaveinfluernedtleoutcaneofthesudy. Firriingsof thereseardlcpestimanimbcpestiasaredisalssed. Noreferenceto flafirdimofprevimsresearchshflieswillbenadeinttn discussimchetclackofreseardlinthisarea. 'Ihus,ncstudies mdsttorefllteoralppcrtthefiniingscfthesuny. Limitationsof the present study are cited, and inplications of the study for nursing practice, edlcatim,ardfuu1rereseard1arepresented. Areviewof theprevimsdlaptersismvbeimpresented. E . :2 . 2 ! Inl971,after24'yearsinthedmgnarketp1ace,mswasbamed inthetmitedStatesjoruseinpregnamy. 'nlisalce’dnmtof MimcleWIBedinprevaItingmiscarriageswasmvlimtedto vaginal cancer. The dissaninatim of ms left a large portion of the pqulatimexpcsedtotheeffectsofthisdmg,imluiingmtmlythe wunen who initially took but their offspring and possibly subserpentgenerationstofollow. InrespaeetotheIISprdalan,the"I‘askForcewasformed. 'IheTaskarces’smissimmstoreviavallaspectsoftheDES prdalen,tomkerecamendatiasforhealthcareoftheexpcsed,ani toreseard'idirectia'sfcrmdicnlreseardlers. Frunthesefirriirgs, 86 87 WtiasforscremirqprocemnesoftheIIS-ecposedpqnlatim wereestablished. 'meplrpcseofthisreseardmwastcascertaintheexterrttowhidl “daughtersreceivethehealthcarerecamendedbytheFederal Gaverrmrt's‘TaskFcrce. Analysis of data indicated that 77.6% of thesufiysanplereceivedlesstllansmwofttlerecmwfledhealfll mreinacccrdamewiththehderachverment's‘TaskForce recamvdations. 'megcalofthissuriymstoprovideadescriptimofthe diaracteristimoffalaleoffsprirgeiqaosedto‘inutero,andto deacrihethepattemandtypeorhealthcarereoeived specificin moratoringthepotentialeffectsor-Sexpomreinutero. Thisstudy waspnelydescriptivereseardlaniflmswasmtinteniedtcexplain resultscfthissbldyareinteniedtostimlatefm'therinterestin Aslmnaryofthescciodamgraphicdlaracteristicsofthestudy sanpleardcmparismofthesediaracteristicstothegeneral pcpllation, where applicable, will be presented. Sociodawgraphic daracteristicsoftheparticipam's inthisstudynayhaveaffected fliealtcaleofthesmdybyinfluacimtheirbehaviorsardattiufles. “me wanen in this sanple were primrily white, highly educated and above average socioecormically. The daughter’s perceptiom of the inpcrtance of health, perceived caltrol, access to health care, and 88 perceived balefits to engage in health-prunting behaviors may vary between wunen of different socioecmanic and educational levels. The manner in which the sociodancgraplic variables could have influenced theresultsofthestudywillbepresentedinthedisclssionof firdirqs for the research glestim. 'meneanageofthesuxlyparticipantswasnfl years, witha rarlgefrun16to40. 'nlisrangeiscmsistentwiththedefinition of daughter. The inclmim of only female participants was inherent in the study design. The 1985 U.S. Census reports 47.8% of the female populatimrangeinagefranutou (U.S. Bureauofthecensus, 1986, p. 14). 'Ihemajority ofwunen inthe studywerewhite (99.0%). The mining participants were: 0.3% black, 0.1% American Iniian, and 0.6% other (i.e., Jedish and Asian). According to the 1985 U.S. m, 83.7% of wanen betwea'l the ages of 15 and 44 were white: 13.0% were black; and 3.3% were other (U.S. Bureau of the Oersus, 1986, p. 18). Therefore, there was a larger proportim of whites in the preserltsuflythaninthegaleralpqnlatim. The majority of participants (99.3%) were high school graduates and of these, 72.3% had a four-year college degree or higher. According to the 1985 U.S. Germs, in the general population for feIales 25 years of age or older, 41.3% were high school graduates and of these, 16.0% had four or more years of college (U.S. Blreau of the Cans, 1986, p. .122). Therefore, the educational level attained in the surly sanple washigher than the educational level attained in the general pcpulatim. 89 The najority of daujlters- in the stuiy were narried (70.0%), 24.3% sirgle, 4.3% divorced, 1.3% separated, and 0.1% widowed. The 1985 0.8. Census reported the following percentages of marital status categories for females over 18 years of age: married, 60.5%; single, 18.2%: divorced, 8.7%: and widaved, 12.6% (U.S. alreau of the Census, 1986,-p. 38). Thus, the study sample had a higher percentage of mrriedardsinglewmm, arrilesswidowedanddivorcedwunenin cmparismtothegmeralpqaulatim. Dletotherelativelyyoung sample, thesanewidowstamswculdnotbeexpected. Atotal fmily inccm of $25,000 and above was rqaorted in 80.4% ofthes'uflysanpleardofthese, 43.0%hadatota1 familyincaneof $50,000 or mre. The 1985 0.8. Corals reported the median family ilmneintheUnitedStatesaccordingtoageofInlseholderas: 15-24 years, $15,049: 25-34 years, $25,085; and 35-44 years, $31,066. Of the 0.8. pcpllatim 47.6% had a total family incane of $25,000 and above ad of these, 14.8% had a total family incane of $50,000 or more (U.S. Mean of the Census, 1986, p. 432). Therefore, the median fmnilyincmeforthestuiypcpdlatimwashigherthanthenedian family inccme for the general population. 'nlesuriysanplerepresentedcarereceivedin45states thruagtmtthemmtry. Offliesanpleinthisstndy, 24.6%werefrcm the Pacific Coast States, 23.6% fran the Middle Atlantic States, 18.7% frm the Midwestern States, 15.7% fran the Sarthern States, 9.2% from the New England States, 5.7% frun the Southwestern States; 1.8% fran the Racky Win States, and 0.7% fran Alaska and Hawaii. A large perca'rtage of the sanple in the study were fran California (21.3%) and Navka (13.0%). 'me‘Actim'smtccastheadquarters is located 9O inCalifonIiaandtheeastccastheadrpartersislocatedinNenYork. mis,aswellasthelargepqnlatiminttmestates,mayhave curtrihrtedtotherespmserateinthosetwcstates. Inamnary,thesalmleinthepresentsuriywascamosed primrflyofmite,narriedmwithahighsdioolorgreater edmtianlattaimart,aniwifllafamilyircaneen:eedirgthenedian family irccme for the general pcpulation. No correlation between socialclassandrateofIISexposurewasfourdintheliter-ature. It mybehypothesizedthat‘expomreisaprimrilymidile—class 11m. Swas-nainlygiventovnnenmowereseeninprivate practiceorclinicsettimsvtnwerereceivingthe"best"prenatal careatthetime. 'nms,‘thewunenwhoobtainedthishealthcarewere mstlikelyfrunthemiddletcurperclass. 'Iherefore,itmaybe correctinasamingthenajorityofU-expcseddaughtersinthe UnitedStatstodayarewhite,middleoru;perclass,aniccllege edxated. Other possible explanatims why the daughters in this sanple wereprimrily white, highly educated, andaboveaverage socioecclmically my incltfle: wunen frcm the lower socioeconcmical classdidmtseekorhaveaccesstoprenatalcareduringtheperiod M‘msbeirggiventopregantm:bladcwnnenmayhavemt receivedthestaniardofcareorsoughtaccesstoprenatalcare;the blackmthermayhavereceived‘brttherearenckmwnentities: arnther possible explanatim to this phencmernn is that the majority ofwunenwhoamscribetotheWarewhite,middletoupper classfanales. Thus, thecharacteristics ofthestudysanple may or mymtaffecttheapplicabilityofthemltsofthissttflytothe 91 gameral‘pqmlatim. However, thereismdatamthelISdaughter with which to ampere. W ulltiple regressim revealed there was no significant relatiaahipbelmeenthedepelflentvariable, Mcftena‘daughter seesahealthcareprcviderfor‘examimtiore, ardtheirflependent variables which consisted of the daughters' educational level, total family income, health insm:ance, age, arr! mrital status. No significant relatimship was sham as the dependent variable did not dacnstrate a significant variation in examination frequency: 42.6% sawahealthcareprcviderfor‘eaaminationseverysixmonthsand 48.5% mce a year which consisted of the majority of daughters seeing ahealthcareprcvideratleastaneayear. 'lhus, thereis inslfficient variatith in the depa'IderIt variable resulting in the irdependart variables shIJwing low bivariate variation. Also, correlatim between iniependent variables was not significantardisduetothernnogerungrmporlackofsufficient variaticn in this study sanple. 'Iherefore, the nultiple regression resultscwldmtbeusedtomderstanitheeffectsoftheextranews variables (:1 the dqendent variable, as there was not sufficient variatiaibeuveenthedepaflmtvariableorvariatimbetweenthe indepa'dart variables to provide a significant relationship. InthepresentstIfly,therealltsofsevensubquestionswere utilizedinanswerirgtheoverallresearchqnsticn. Toanswerthe overallreseardlcpestim, thesunysanplewasdividedintoeight grulpsacccrdingtoacmbimtimofthreedlaracteristics: whether 91 gameral‘pqmlatim. However,thereismdatamtheDESdaughter WW untiple regressim revealed there was no significant relatiashipbehaearthedepadartvariable,havoftenafidaughter sessahealthcareproviderfor‘examimtims,anitheirdependent variables which cmsisted ofthe‘daughters’ educational level, totalfalnily incale, health insurame, age, andmarital status. No significantrelatia'shipmsstnwnasthedepenientvariabledidmt dmstrateasignificantvariatiminexamimtim frequency: 42.6% sawarealthcareproviderfor‘examirntionseverysixmrthsam 48.5%aceayearmidlcasistedofthemajorityofdaughtereseeing ahealthcareprovideratleasta'ceayear. 'Ihus,thereis insufficient variatitm in the dependent variable resulting in the iniepaldent variables staring low bivariate variation. Also, correlatimbetIIIeeninepelfientvariableswasnot significantardisduetothelmoganlsgrouporlackcfmfficient variatim in this surly sanple. Therefore, themltiple regression mltscalldrntbeusedtomderstardttneffectsoftheextraneals variable mthedepementvariable, as therewas not sufficient variatiaibetweenthedeperdartvariableorvariatimbetweenthe iniquenlmt variables to provide a significant relationship. Inthepresentstudy,theresultsofsevensubquestionswere overall research questim, the stuiy sanple was divided into eight grnpsaccordingtoacmbinatimofthreedlaracteristics: whether nu— 91 gaml‘pqulatim. However, thereismdatamthe‘daughter mm: mltiple regressim revealed there was no significant relatiarshipbewearthedeparhxtvariable, howoftamalISdaughter seesahealthoareproviderfor‘examimtims, andtheindependent variables which omsisted of the IIS‘daLghters’ educational level, total family inane, health insurance, age, and marital status. No significant relatimshipwasstwnasthedepmdentvariabledidmt dm'nstr'ate a significant variatim in erminatim W: 42.6% sawahealthoareproviderfor‘examimtionseverysixmrthsand 48.5% cnoe a year which consisted of the najority of daughters seeing ahealthcareprovideratleastaceayear. 'Ihus, thereis irmfficiart variatitn in the depa'dent variable resulting in the W variables showing low bivariate variation. Also, oorrelatim between independent variables was not significantaniisduetothelmngernlsgrwporlackof sufficient variaticn in this study sanple. Therefore, the nultiple regression resultsomldmtbeusedtomderstardtheeffectsoftheeutrareous variables on the depaflent variable, as there was not sufficient variatia'i between the dependent variable or variation between the iniepaadent variables to provide a significant relatimship. Inthepresentsudy,theresultsofsevensubtmtionswere utilizedinanswerixgtheaverallreseamhquestim.1barmrthe overallreseardltpestion, thestniysanplewasdividedintoeight groupeacoordimtoaomifinatimofthreedzaracteristios: whether 92 tledmrfirtersfandwtabmttleirexpoanedn'irgwbertwvmether fleytndeacperianedanahnrmlmpsnear;arfl/orvteflertteyhad mienedotherepithelialdmges(i.e.,dmmgesinvaginal lining/tissue) . 'me amber and ombinatim of relevant subqueetions thatchscribaivhathealthcareneekdtobereceivedbythems dmghterstoocnfom‘totheFederalGovenmt'slISTaskaroe reoamendatiaas differed for each of these grams of daughters (seeApperdixG). ‘mefirdingswillbediswssedinthefollwirg sectim. - Itnxstbereiteratedthatscne‘daughtersweremtaooamted forinthefinaldetemimtimoftheextentofreoannafledhealth oarenet,duetoanittirgarmetoqrestiaeintheqaestiamaire thatwerecriticnlindetemiflngvhetherornotaspecificaspectof terhealthdarewasreoeived. 'nms,mlyvalidoaseswereincltdedin 'mewmaaomisingcrapsl-4mre‘daughterswholeamed offlreirexpoalrealrmgmberty. ‘Beterne'fiuringpbertfland "afterpxberty"werereferenoedinthissuriy. Fourteenyearsofage isusedtodelixeatethewperlimitofwbertyinthisstudy: therefore, "afterWreferredtomwholearredoftheir expoazreatISyearsofageorolder. 'Ihisagewasdnosenin aooordamewiththe‘l‘askl‘broereoametflatimthatperiodic screaairgexaminatimsshouldbeginatageuoratthemsetof wees whichever was earlier. ‘Ihe study sanple consisted of 80 (11.9%) Udaughterswho learned of theirexposureduring puberty. 'mennberofparticipantsincrwpsl-4omsistedof66m‘s daughters. Culprisingtherenairderofthestudysanplewere 93 GrapeS-Boaeistingofwunenwholeanedoftheir‘exposure afterplberty. m1: meholearnedoftheirexpoaneduringpnbertyardwho didmtexperienoeanahmormlpapsmearorotherepithelial changes(i.e.,d1argesinvaginal unity/tissue). Offle‘danghtersomgrisingGrmp 1 (n= 17), 58.9% received sotamreofthemlmmmreomnafledbyfleFederalGovenwrt's “Task-Force. Fivecriteriaweremedtoestablishtheextentto midithe‘danghtemincrwplreoeivedthehealthczre reoannerdedbytheFederalGoverrmxt's‘TaskForoe. 'lhereailts ofthecriteria foanwplwere: 35.3% reoeiveda periodicscremhgexaminatimbegimingatageuoratthemsetof meesmidaeverwasearlier; 45.5% reoeivedtheappropriatescreening prooedmeateadmexamimtim(i.e.,minimlly includedapelvic Mum, cytology test,andiodine staining);94.1% reoeivedan examimtimatleastcrneayear;81.3%radaoolposoopyduringtheir initial examinatim for baseline data: arribr'eastexamjmtionswere perfonnedin18.8%aooordimtofl1eanrrentNCIguidelirneregarding fregaeteyofscremirgacammatiore. m:Wanenwnleanedoffl1eirexposmedurinngbextyarflvmo didecperienoeanah'nrmalpapalearhltdidmtexperienoe otherepithelialchanges (i.e., daangesinvaginal lining/tissue). Ofthe‘daughtersomprisingcrwp2(n=2),reitherofttme ‘daughtersreoeivedfllfi%ormofiofthehealthcarereoamerfledby theFederalGovennent'slI‘STaskForoe. Eigtrtcriteriawereusedto establishtheextauttowhidmthe‘daughtereinGrouereoeived 94 thehealthcarereomnariedbythef‘ederalGovernnent’s‘Task Fbrce. 'nrerealltsofttxecriteriaforGrquZmre: mereoeiveda periodicscreeningexaminatimbegixmirgatageuoratthemsetof museswhidxeverwasearlier. Oreofthetwointhesanplereoeived tlearprqar'iateprooedneateadiexamimtim (i.e.,minimally ircltfled a pelvic eram'nation, cytology test, and iodine staining). aeofthetzmwasexamiredatleastaneayear. Morefreguent examinatims were due for wunen with extensive atypical epithelial darqesinaae‘danghterinthissanple. mtaweremissingin regards to oolposoqay utilization for this group. Biopsies were not perfomdinthisgrcupwhenirdicatedbyahaormalpapanears. In reitherofthe‘daughtersomprisingthisgroupwerebreast examinaticmsperformedaooordirgtotheairrentNCIgujdelm WWOfWWfiGB. m3; Wanen'wholearredoftheireuposureduringpabertyardwho didmteuperienoeanabrnrmlpapsnearmtdidexperienoe epithelialdnames(i.e.,d1argesinvaginal lining/tissue). ' Ofthe daughters omprisingthisgroup (n= 22), 36.4% reoeived50.0%ormoreofthehealtheare-reoameniedbytheFederal W’S‘Taskf'oree. Eight criteriamreusedtoestablish flammmmuemdamtemmmamiveduemlth carereocunerfledbytteFederalGovenuent’s‘TaskForoe. Therewlts ofthecriteria forGroupBwere: 35.0% reoeiveda periodic screening examination beginning at age 14 or at the onset of meesmidxeverwasearlier; 62.5% reoeivedtheappropriate 95 mum mire at each examination (i.e., minimally included a pelvic examiretim, cytology test, and iodine staining): 95.5% received an examinatim at least once a year; 33.3% received more W aminatims as a result of experiencing extereive atypical epithelial changes; 14.3% had a oolpoecqay as a result of experiencing extensive or widespread epithelial changes); 81.8% received a oolpoeccpy during their initial examinatim for baseline data: 8.3% received biopsies when indicated by other evidence of significant epithelial ahnmlities; and breast examinations were performed in 23.8%accordimtomerrtNCIguideliIesregardingfreqenzyof screening examinatims. m: mmnleanedoftleirexpoalredurilgplbertyandwho didexperialceanabnormalpapanearandotterepifielial ‘ charges (i.e., changes in vaginal lining/tissue). Ofthe‘danghtersoatprisingthisgrup (n=25), none received50.0%ormreoftlerealthcarerecmnendedbytteFederal W’s‘l‘askf'orce. ‘l’encriteriaweretmedtoestablishthe mutto‘midithemdaughtemincrwp4receivedthehealthcaxe W by the Federal Gaverment's Task Force. 'ne results of the criteria for Greup 4 were: 21.7% received a periodicscreeningexamiretimbegirmjngatageuorattlemsetof lenses whichever was earlier: 36.4% received the appropriate screening procedure'at each examination (i.e., minimlly included a pelvic amination, cytology test, and iodine staining): 92.0% received an examinatim at least cnce a year; 55.6% received more frequent examinations as a result of experiencing extensive atypical epithelial Ganges: 37.5% received a oolposcopy as a result of experiencing 96 exta‘eiveorwidespreadepitlelialdlamemrueoferulp4receiveda oolpoeapywtmirflicatedtyanahnrnalpapanear:7o.8%receiveda mlposcqudmingtleirinitialexaminatimforbaselimdatmm bimsieswereperformedinthisgrulpwtminiicatedbyamormlpap saears or when indicated by other evidence of significant epithelial annualities3breastexalniratiaewereperformedin8.0%accordirgto ammuwidelilesregardmgfreqlacyofscreafimaamimtiae. m: Waenwholearxedoftleiracpoalreafterpubertyandwmo didmteI-cperierneanahlormalpapmearorotlerepitlelial changes (i.e., diarges inthevaginal lining/tissue). Ofthe‘daughtereccnprisingcroup5(n=95),51.6%received 50.0%ormreofthehealthcarerecamendedbythef'ederal Gavertmrt’s‘l‘askf'orce. Falrcriteriawereusedtoestablishthe extaltto'whidxtle‘daughtersinGrUJpSreceivedtletealthcare recamendedbytteFederalerenuent’slIS'IaskForoe. 'meresultsofthecriteriaforGrQJpSwere: 18.3%receivedthe ammopriatescreafingprocedureat each elanfimtim(i.e.,minimlly ineluled a pelvic examination, cytology test, and iodine staining): 65.5% receivedanexaminatimatleastonceayear; 72.0% receiveda colmcopy during their initial examination for baseline data: and breastelminatimswereperfornedin18.9%accordingtothecurrent NCIguideliJesregardirgfrequencyofscreeningeuamimtions. m: tholeanedoftheirexpoalreafterpubertyandwho didexperienceanahlomlpapsmearhrtdidmtexperience otterepitlelialdlanges(i.e.,diangesinvaginal lining/tisale). 97‘ 0ffle‘danghtereomprising6:u1p6(n=30),3.3%received 50.0%ormreoftl'etealthcarerecunnafledbytl‘er'ederal Goverlmrt's‘TaskForce. Sevencriteriawereusedtoestablish theeactenttowhidithedatghtersincroup6receivedthehealth carerecalmfledbytteFederaleerment’sUTaskForce. 'n'leremltsofttecriteriaforcralp6were: 13.3%receivedthe whammmecedureaeadleimiratim (i.e.,minimlly incluied a pelvic examinatim, cytology test, and iodine staining): 65.4% receivedanexaminatim at leastonceayear; 42.3% received mre frequent examinaticns as a result of experialcing extensive atypical epithelial changes; note ofGroup 6 receiveda colposcopy wtmir'dicatedbyanehlormalPapsmear: 74.1% receivedacolposcopy dringtteirinitialexamimtionsforbaseliredatmmeofGrmpG receivedabiopsywhalirdicatedbyanabnormalPapaneanardbreast eimimtimswereperformedin23.3%accordingtothemrrentNCI guichliresregardingfrequencyofmingelminatiote. W: Wanmwholearnedoffleirelmoalreafterpubertyarflwmo didmtexperierneanahlormalPapmearbutdidexperience otlerq>itlelialdlanges(i.e.,dlangesinvaginal lining/tissue). Ofthe‘dmgtrters carprisingerp? (n= 113), 11.5% received 50.0%ormreoftherealthcarerecaunerfledbytler'ederal Govmt’s‘TaskForoe. Sevencriteriawereusedtoeetablish theextarttowhidlthe‘daughtersincroup7receivedtlehealth carerecamerdedbytteFederalGoverment'sU'l‘askForce. 'lheresults ofthecriteria forGroup7were: 30.1% receivedthe amropriate screening procedure at each examination (i.e., minimlly 98 included a pelvic examinatim, cytology test, and iodine staining): 78.4% received an examinatim at least mce a year; 23.1% received metreqaartenminatiaaasaremltofexperiencingextelaive atypin qzithelial dangea; 57.7% received a oolposcqu as a result of experiencing exteraive or widespread qaithelial changes; 80.7% received a colposccpy air-in; their initial examination for baseline data: 8.5% received biwsies when indicated by evidence of significant epithelial anionnalities; and breast examinatims were performed in 21.4%accordirqtoaur'artNCIguideliIesregardirgfreqerayof screening examinatiota. M: mmlearredoftleirexposureafterplbertyardwta didexperienceanahiormlpapanearandotherepitrelial darges (i.e., changes in vaginal linirg/tissue). Ofthe ms daughters cmprisingGroup 8 (n= 199), 16.0% received 50.0%ormoreofthel‘ealthcarereccmnendedbytheFederal Govenmt'slI‘STaskForoe. Nixecriteriawereusedtoeatablishthe extalttowhidithe‘daughterainmlp7receivedflerealthcare recamaaed by the Federal Gwernnart's Task Force. The rearlts of the criteria for Group 8 were: 25.5% received the amr'opriate screening procedure at each examination (i.e., minimally included a pelvic examination, cytology test, and iodine staining): 87.5% received an examinatim at least once a year; 58.2% received rare freqra‘rt examinaticns as a result of experiencing extetaive atypical epithelial changes; 31.3% received a colposccpy when irdicatedbyanablornelpapanear; 55.1% receivedacolposcopyasa result of elqeriencing exteraive or widespread epithelial changes: 77.7% received a colposccpy during their initial examination for 99 bmeline data:18.0%.receivedabiopsywmenin1icatedbyanaharnal Papslear: 30.4% receivedabiopsywmenirdicatedbyotlerevidence of significant epithelial almonelities; and breast examinatiora were perfomdin23.6%accordj1gtoamltNCIguideliresregardixg Wofscreeningexaminatiaa. WW Inmry,thest1flysanplewasdividedintoeightgroupsbased upmacmbinatimofwfletlertledaughtersfamdoutabaxttheir atpoalredn'irgpaberty:wtetlerfleyhadexperiaaedanabtarmlpap manard/orwhetlertheyhadexperiencedotlerepitlelialdlanges (i.e.,changsinvaginal lining/tisae). Eadlgr'oupwasanalyzed accordingtorelevantsubqaeatiaathatdescribedtlerealthcare reedai‘bohereceivedtocaifomtotheFederalcovenment’smSTask Foreerecumariatiola. alceapercentagedescribingtheextentto whidleadlgruipof‘daughtersreceivedtterealthcarerecaunerfled bytleihderalcoven'nent'sumskmrce,theextentwascalmlated fortheentirestudysanple. Intheprevious section, the relevant criteria for eachgroup Pattenaincriterianetandmtnetacmsstlegrulpsowldbe ascertained. Fortiase‘daughterswhoweretoldoftheirexpoalredurirg aberty,periodicscreeningexamimtiaaweremtbeingdmebegimfirq atage14orattheaaetofneraes(whidleverwasearlier). The erelsareasonforthisnaybethatthemotherdidmtwant to bring her daughter for an examination which is normally initiated laterintleteeraorafterbecanirqseamallyactive. 'Ihismaybe 100 thatthemtherfeltguiltyabaltexposimherdiildtoms,fearof tlemflumn,ani/orfeelixgsthatlerdiildwasbecanimawunan. 'Ihe ‘dmdrteratthisagewasnotrmaibleforinitiatirqhertealth care. Overall, itappearedthattledatghterswhoweretoldoftleir acpoalreduringpbertyweremrelikelytoreceiveappmpriate scremh'gpmceduresateadlexamimtim,aswellastohavean amimtimatleastalceayear. Aspecalatimintothereasonfor thisocanenceisthathdaughterebetweentheagesofmardu hawbealreportedashavirganimreasedocclrremeofadenocarcimna ofthecervix,ardthereforearebeixgncnitoredmrecloselydurirg thistine. Reinforoauentoftheinportanceoftle‘screening mamimtimandfamiliaritywimtlescremingprocedmeareoccn'ring atanearlierage. 'nerefore,this3dau;htermaybemoreliJ-celyto ourtinretoreceiveemminatiaaatleastonceayear,andbemre lfltelytoreceiveamropriatescreemngprocedmesateadlelamimtim dietorerpreviaatealthcarebetaviorsardexpectatiola,arrlrer knowledge of U. Repetition of the behavior will reinforce and strerghtenlerbeliefsintreberefitstobegaired. lbrefregurtexamimtiolaarebeimdaeforwunenwith exteraive atypin epittelialdlangaainbcthgmlpsofwunende” flasewiafamiartabartfleirIISexposureduringpabertyaniunse dafanriartabarttteir‘exposureafterpbertflwhohavebothan ahnmlPapanearanddlangeainttevaginallining/tissre. 'Ihe researcherfeelsthatthehealthcareprovidermaynotstressthe inportaxaeofmrefreqentexamixatiaa(i.e.,mrethanonceayear) forwmenwhoraveanaharmalpapsnearasthisisacanmfirdim 101 in‘datghtere. Itismtuntildlarqesintl'evaginal linixq/tissneocclrswithanah'armlPapanearthatcredenceisgiven tofollmirytle‘datghtermreclosely. Also, the‘daughter laybere-assuredbytertaalthcarepruviderthatabnormlpapanears mmmuyinmdaughtezsaraflmttomyahwtit". 'narefare,theinportalaeofmrefrequa1texaminatiaaneynctbe advocatedbyterlealthcareproviderortleinportanceoffollow—up isnotreinforoed. 'metaeofcolposccpyammopsywasutilizedinalowperoentage oftlewmenwmoreportedanabnormlpapsmear. However,the colpoeccpyandbiopsywereutilizedinahiglerpercentageofms dmxgmerewtaexperieraedbcmanaharmalpapaiearanihadeviderae ofotlerepitlelialdianges,a1riwtafamicutabcuttreirexposure after'pflaerty. Again,theresearderfeelsthismaybeduetothe Wormlpapsnearsinthem-ecpoeedfemleanilackof omcernof thehealthcareprovider for further follow-up. Also, lack ofegrimrt (i.e., colposcope) inthehealthcareprovider’s office mycurtribrtetotteladcofthisprocedurewmenindicated. 'neoolposcquwasutilizedin70.8%to81.8% ofthe‘ charters in this sanple. The high utilizatim of the colposcopy nay havebemduetohighmediarecognitimoftheuseofthecolposcope intheinitialscrealingof‘daughters. 'Ihecostofthisprocedure mayomtrihxtetotleoolposcopymtbeingtaedrwtirelyin insitswmenirdicatedbyaharmalpapsuearsorepiflelial changes. "Iha,tlelackofreccnmerriedtealthmreintheabcve-stated areas(i.e.,Subq.estioral-6)naybeattribrtedtothehealthcare 101 in‘daughters. Itisnctuntilchangesinthevaginal linirg/tisaeoccnswithanabrarmlPapaneartlatcredaaeisgiven tofolladingtle‘daughtermreclosely. Also,the‘daughter mybere-asalredbyrerlaalthcereproviderthatabrarmlpapsnears occurfreqartlyin‘daughtersardwtownrryabaxtit". 'merefare,tleinportaraeofmrefreq.laltexaminatiaanaymtbe aivocatedbylertealthcarepreviderortleinportanceoffollow—up ismtreinforoed. 'neuseofoolposoquanibiopsywasutilizedinalowmrcentage ofthewulenwhoreportedanabrarmalpapsnear. However,the oolposccpyardbiopsywereutilizedinahiglerperoentageofms datmterewtnexperiencedbothanahbrmlpapsnearanihadevidaice ofotherepitlelialdarqes,aniwmofo.mialtabazttleireaqlosure afterplberty. Again,theresearderfeelsthismaybeduetothe Wofmlpapsnearsinmem-euposedfenaleamlackof oaaernof thehealthcareprovider for further follow-up. Also, lack ofeguimlt (i.e., oolposcope) inthehealthcareprovider's office maycartributetothelackofthisprocedurewheniniicated. ‘nlemlposcqaywlasutilizedin70.8%to8l.8% ofthels daughters in this sanple. The high utilization of the colposcopy may havebealdletohighmediarecognitimoftheuseofthecolposcme intleinitialscremingofdeaughters. 'Iheoostofthisprocedure mycartrihxtetothecolposcopynctbeirgusedmrtirelyin aiaequentvisitswheniniicatedbyahmomlpapatearsorepiflelial changes. ~'naa,thelackofrecamerrledtealthcareintheabcve-stated areas(i.e.,Subguestioral-Qmaybeattrihltedtotlehealthcare 101 in‘daughters. Itismtmltildlangesintlevaginal linirlg/tisaeocclrswithanahlonelpapsnearthatcredenceisgiven tofollwirgthe‘daughtermreclosely. Also,thelIBdaughter mybere-assuredbyrerrealthcareproviderthatabrarmlPapmears occurfreqartlyin‘daughtersanthoworryabartit". Barefore,theinportanceofmrefrequartexaminatiaamaymtbe advocatedbyherlealthcarepmviderortteiuportameoffollow—up isnotreinforoed. Thetaeofcolposcopyandbiopsywasutilizedinalowpercentage oftrewulalwhoreportedanatnomalpapsnear. Ibueventhe oolpoecqsyandbiopsywereutilizedinahigherperoerrtageofms dauglrterewraexperielaedbothanabaormlpapsnearardhadevida‘ae ofotherepitlelialdlanyes,ardwhofomrlaltaba1ttleirexposure afterplberty. Again,thereaearcherfeelsthismaybeduetotre Wotaunmlpapsneaxsintreu-exposedfemleandlackof cmcern of thehealth careprovider for further follow-up. Also, lack ofeqflmrt(i.e., colposcope) inthehealthcareprevider’s office mycartributetothelackofthisprocedurewhenixdiceted. 'naeco1posodpywasutilizedin7o.8%toel.8% ofthem daughters in this sanple. The high utilization of the colpcscopy may havebeenduetohighnediarecognitimoftheuseoftlecolposcqe infleinitialscreeningof‘daughters. ‘Iheoostofthisprocedure maycartributetotleoolposcopymtbeingusedmltirelyin thisitswhaliniicatedbyahnrmalpapsnearsorepiflelial changes. -‘nna,theladcofrecmmendedhealthcareintheabcve-stated areas(i.e.,Subq.lesticxal-6)maybeattributedtotrehealthcare 102 previdere',aswellastle‘da1ghters',ladtoflcawledgeregarding the‘Taskarcerecumerdedhealthmrmcostofprocedurea:lack ofmaryeqfimxt(i.e.,colposc®y);lackof skillstoperform fintterexamimtiomorlackofreferraltoalealthcareprovider hmledyeableregardingII‘Seaminatiaa. 'neexterrttowhidlbreast mixetiaa(3ubq.estim7)wereperfornedaccordingtoNCI Acrossalltl'egrulps,tleextenttowmidlbreastexaminatiaa wereperforuedaccordingtotleclrrentNCIguideliresregardirgthe freqaayofscreenirqexaminatiaawaslm,rangingfrano.0%to 23.7%. Possible explanatiaawhy a lowpercentage of [IS daughters met the criteria for breast eneminatiaa include: the psychological stress/anxiety associated with the possibility of discovering an annuallumthmlghBSE;lackoflamledgeregarding$Etedmiqnsi lack of cmfidence in ales examination abilities; lack of iratnlction forwhaaardrmtoperformm;lackofreinforcanentbylealthcare provider: healthcareprovider's omcentratimmtheotleraspectsof tle“e:minatim;ammtoftinerecpiredbyarealthcarepmvider foraomplete‘examiretim; tealthcareprovider'suseofam veraaNCIqrideliresregardingmanmgraphyuse:ardtleDES daugtrter'sladcoflcmledgeoftleuseofnenmgrafilyasadvocatedby 'nefreqlalcyofmardtealthcareproviderbreastexaminatiora westaedinassessingfreguerayofbreastexamiratiaainaccordance withMIguidelines. Also,whetterormtamnmograplyhadbeen performdforscreafirgverelsdiagmsticreasorawasascertaired. 103 Mgtlideliresforuseofnemagrarhyweretaedbythemsmskrbrce toestahl-ishreoannendedhealthearerorthemdaighter. 'neNCIdoesnotrecama'damamgrapiytobeusedrcutirelyas ascxeeningnethodforwmenmderageso. Sincethebenefitof screamingwunalmderSOyearsofageismtyetclear,theNCIdces ratrecamelflmnmgraplyasapartofanamlalexaminatimforwmen mflerageSOwhoaremtinahigh-riskgrup. AccordirgtotheNCI, tlethreehigh—riskcategoriesare: mageSOormore,wnnenage 40ormrewithafamilyhistoryofbreastcamer,ardwmenage350r mrewithaperemalhistoryofbreastcancerm.s.neparulentof HealthaninmanServices, muse, p. 5). Inthisstuiy,forthellsdaughtertobeoaaideredasmeeting tlecriteriaforapprtpriatelealthmreinregardstobreast examimtiaa,ttewmanmst: performmrthly$mherprovidernust perfombreastexaminatioraateieryiscreeningexamiretim;aIfla nmmgraphymstobeperfornedforscreeningonlywhenthewunanis inahigh-riskgralportlemamngrafilywasusedasadiagnostic procedmeforwmenwhoravesynptalaorfiniingsassociatedwithtle presenceofbreastcencer. 'Bnainthissuny,ifamanlnographyhad bealperformedforscreeningarrltlewmendidmtclassifyashigh riskaccordirgtotleNCIguidelires,thewmenwascaaideredmt neetimttecriteriaforamrtpriatetealthcnreinregardstobreast examinatioraasthetaeofnanmographyforscreeningwasnotin accordamewithtleNCIstarldards. Mavenifamographyhadbeen performdforadiagmsticreason,andtteBSEandhealthcare previderbreastemmirationwereinaccordancewithNCIguidelirm, thewulanwasoaaideredasneetirgtlecriteriaforappropriate 103 MWiresfortaeofmnmograylywereusedbythemSIaskarce toestablishrecameniedhealthcarefortledeatghter. 'IheNCIdoesmtrecamerdamnmgrarhytobeusedmxtirelyas ascreeningnethodforwnnenmrierageso. Sincethebenefitof screafingwulentmderSOyearsofageismtyetclear,theNCIdoes mtrecmna'rimgraghyasapartofanamlalexaminatimforwunen magesomoazemtinahigh-riskgmip. AccordingtotheNCI, thethreehigh-riskcetegoriesare: wunenageSOormore,wmenage 400rmrewithafamilyhistoryofbreastcancer,aniwmenage350r mwdthapereaalhistoryofbreastcamerm.S.Departmelrtof HealtharrifunanServicea, Augustl986, p. 5). Inuiisstudy,forthemdaughtertoheoomideredasneeting ttecriteriaforappr'opriatelealthcareinregardstobreast examimtiaa,thewauannust: perfommrthlyBSE31erprovidernust perfombreastexamiiatiaaatevery‘screeningeuamination;anda mnmograrhywastobeperformedforscreeningmlywrenthewananis inahigh-riskgrmportlenemngrafilywasusedasadiagnostic procadmeforwmalwhohavesynptmaorfirdingsassociatedwithtle presenceofbreastcancer. 'Bnainthissmdy,ifanamngramyhad bealperfornedforscreeninganithewmandidmtclassifyashigh riskaocordingtotleNCIguidelines,ttewmanwascaaideredmt meetirgthecriteriaforappropriatehealthcareinregardstobreast mimtiaaastleuseofnemografilyforscreeningwasmtin aocoxdamewiththenastandards. However, ifanamngrapxyhadheen performedforadiagmsticreasm,ardthe$Earrihealthcare miderbreastewaminatimwereinaccordancewithNCIguidelires, the m was oaaidered as meeting the criteria for appropriate 104 healthmreeventhaghshewasmtclassifiedashighriskfor screeningaccordingtoNCIguidelixes. MWflemsu-BTaskForcehasrecmnerdedtleNCI guidelines forbreast examinatiaa for daughter's, health care proviarsneyuseotterstarrlardsintheirpractices, especially regardirguseofmngraphies. Sanehealthcareprovidersney recmnenlruxtileexamimtimwithmnmgraplyforwmenwmoaremt inflethreeNCIhiQI-riskgrarpsbemlaetheyfeelitiseffectivein findixgearlybreastcancers. Medial associatia'a advocate a variation in guidelines regarding tlefrecpalcyardtaeofnenmograpiy. 'mefollowingareexanplesof policies established by various medical organizatiaa: 'nleAnericnnCancerSocietyrecametfls: "abaselinemanlnogram betwealages35and4o. Behem40and49,nenmographyatore— totwo-yearintervals. WanamaverageSOshouldhaveamanmogram MM” 'me Anerican College of (lastetriciara and Gynecologists nemnografllystatanentsaysthatwmen: "overtheageofso should receive regular breast examinatiaa including manmography atintervalstobedeterminedbytlepiysician. Forwmen betweentteagesof35and50,itisrecnmeniedthata ‘baselixe'nmngrambedaeincmrectimwithaolinical physical examination. Franthe results of this baseline eValuatim and other examinaticxa, the physician should determine tlefreqaayofnmmography." The American College of Radiology mgr-array pol icy states: "For asynptanaticwmenttefirst, orbaseline, 105 mgramstmldbeobtailedbyagew. Anearlierageis preferablewlentlereisaperemalhistoryofbreastcancerora historyofprenapataalbreastcencerintlepatiart'smtrer ani/or sisters. Subsequentmnlnographic examinatiaa sl'lmldbe perfornedatae-totwo-yearintervalsdetermiledbythe cmbined analysis of physical ard We findings and other risk factors, unlo- medically indicated sooner. Ammal mmgrafilyardphysicalexaminatimarerecmwdedforall wmenoverageso." Eachofthesepolicystatemartsisintendedtoguidethe physician. m. policies can be expected to be modified as new informatim is obtained frunresearch. The final decision regardirqscremirq,ofoourse,stmldbenedemanindividual basis. (U.S. Departmentof HealtharrirhmanServiws,August 1986,pp.6-8) mistleuseofnenmography,asanaspectintlecriteriadealing wi‘thbr'east eliminatiaa of daughters, couldhave affectedthe extenttowhidlbreastexaminatiaaofdeaughterswerebeing perfornedaocordingtotleNCIguideliresregardingttefrequencyof screening examinatia'a. The health care provider’s beliefs guide his/herstandardsof practiceregardingbreast examinatiora. Intrerearflrdlre,ttefldatghtersmaybeidentifiedasa high-riskgrapamunareguirenemegramiesatanearlierage. Healthcarepreviders,aswellastleself—careagents,shouldkeep abreastmthennstcnnentNCIguideliIesthatdirectDEScare. Instmmary,thereisadeficitintleextentofhealthcare receivedby‘daughtersinaccordancewiththeFederalGovenment’s 106 STaskForoerecamadatiaa. Aseveredeficitmaybepreaerrtin thempqnlatimifitishelievedthatthissanplerepresentsa grupbiasedtavardseekirgcareandarecaaideredmst r'qzresaxtativeofdmmmrshighlyinterestedintleircmditimand typify self-care agarts. If this sanple is representative of well-informd, highly activatedwmen and they are not receiving the stardardsochare,aretlereneinierofdau;htersreceiving themScareasadvocatedbytle‘TaskForoe? W Acrosstabdlatim,oftlefreq.etaytowhidlahealthcare providerarawersqestiaaa‘daughterhasregardingherms eiqaosurebywmetterormtthefldaufiterwassatisfiedwithtle lealthcareproviderwmoadministerslerlmhealthcare,was performed. 'Itecrosstabulation indicatedthatwdmtlel'ealthcare provider,*always"araueredq.estiaa, 66.6% of‘daughterswere satisfiedwithtleirhealthcareprovidenwhentheirrealthcare provider "almst always" answered questiora 25.7% were satisfied: when tleir'tealthcareprovider "sanetines"answeredq.estiaa 6.3%were satisfied: what their health care provider "rarely" answered questions l.4%ofHdau;htereweresatisfied:ardmdaughters indicated they were satisfied when the health care provider "never" answered qestims. Inthestndysanple, 87.2% (n=659) reported thatthey were satisfied with their health care provider. Therefore, a factor that cartributes to client satisfactim is the ability to cammmicete Acrosstahllatim,betweenwtetterormtascreening examinatimwasdaeatleastonceayearaniwhetlerornottheDES 107 dmleterwessatisifedwifllfletealthcareproviderwhoadministers her‘healthcare,wasnede. 'necrosstabulatiminiicatedthata screwingexaminatimwasdoneatleastaneayearto86.6%ofthe IISdaughterswtaweresatisfiedwithtleirtealthcarepmvider,ard ascreenirgexaminatimwasdaeatleastaaeayearto62.7%ofthe “daughterswhoweremtsatisifedwithtleirrealthcareprovider. 'naa, clia'lt satisfactim may be a signifimnt determinant of ompliance. mes daughter, who is satisfied withherhealthcareprovider, isnnrelikelytoreceiveascreeningexamiratimatleastonceayear thantl'a‘daighterwhoisnotsatisfiedwithherhealthcare provider. A determinant of climt satisfaction is related to the abilityanioaaistalcytowhidltterealthcareproviderarawersthe “dangtrter'sqestims. Inthisstudy, 93.7%receivedascreeni1gprocedureatleastonce ayearregardlessofwletherormttheyweresatisfiedwithtreir realthcareprovider,arrilessthan25.0%of‘daughterswere receivirq50.0%ormoreofthe"raskForoerecamendedhealth care. ‘Iheclientsatisfiedwithherhealthcareproviderismore likelytogoforacaminatiaaatleastalceayear,butitisnot acmratetoasamethatthisgrulpofwmen,becataetleygofor examinatiaaatleastcnceayear,willreceivetlecarerecamended bytle‘hskf‘oroeatttesellSscreeningexaminatiora. Lackof hmledgeoferecamadedcarebyttelealthcareproviderard/or deaughter,ard1ackofprovider’s skills and/orequipnentto perfomascreeningexaminatimwillaffecttleextenttowhidlthe “WrecehesthetealthcarerecameniedtytheFederal Garerment's Task Force. 108 I' '! !' El] 5! 2 In adiitionto the limitatiora cited in Chapter I, the following limitatia'a have heal ida'rtified which may have affected the results ofthisstlfly: 1. 'Iheformtimoftlewbqrestiaausedtoanswertteoverall researdupestionardcreatetlequestimireaswellasthe criteriataedforscoring,wasbasedupa1thereseardler’s mfierstaniinganiinterpretatimoftlel98SIB'I‘askForce guideliresinregardstoscreenimproceduresforthe‘ dam. .fieS-enmosedmughterflealthareglestionnairedidmt adirmstheaspectofscremirgproceduresinregardstofibcposed danlghtersandtheirtamniesslmldhaveadeqiateexplanatimam ouaideratimoftheplysicalarrlawticmalaspectsofthis aaminatim" (U.S. Departmentof HealtharflHumanServicaa, 1985, p. 22). misareacmldmcatpassaqestimireor interviewinardofitself. Aratteraspectofscreeningproceduresmtdealtwithinthe qestiorinairereferredtotteEEtedmiqleusedbytheDEB daughterintheprwartstuiy. 'mebreasteaaminationofDES daughtersslmldcmfonnwithclrrentNCIguidelires. The frecpencyofscreetlixigatamimticxawasdetermiled,hrtthemE tedmiqueusedwasnotexamined. 'Ihisanalysismayhavebeen relpfulindeterminimiftleIISdaughteriscmformingtotte overallNCIguideliresinregardstobreastacaminatiora. Salesunyparticipantsdidmtamerqestiotathatappliedto than. Bymtaraweringkeyqestiaattatwereusedinscoring, 108 1° '! !° El! 5! 3 In additicnto the limitatiora cited in dapter I, the following limitatiaahavebeenidentifiedwhidlneyhaveaffectedthereaults ofthisstudy: 1. 3. 'neformtimoftlesubgestimstaedtoanswertheoverall rueardiqestimardcreatetleqestionnaire,aswellasthe criteriausedforscoring,wasbaseduponttereseardier's mfierstardingardinterpretatimofthe198513'raskForce glideliresinregardstoscremingprocemxresfortheDES daugrter. . .‘nem-eicposedlhughterfiealthCareQuestiormairedidmt adiresstleaspectofscreeningprocedureainregardsto"£bcposed daughters and their families should have adequate explanation and caaideratimofthefilysicalardenctialalaspectsofthis examiratim" (U.S. Departmentof HealtharrimmanServices, 1985, p. 22). misareacoulderampassaquestiamireor intewiavinaniofitself. Aratleraspectofscreeningprocedmesmtdealtwithinthe daughterinthepresa'ltstudy. 'mebreastexaminationofDFS daughtersstmldcmfomwithwrrentNCIguidelires. The freqatayofscreeningexamimtiaawasdetemired,hlttheBSE tedmiqeusedwasnotexamined. 'misanalysismayhavebeen relpfulindeterminingifthemdaughteriscmfomingtothe overallNCIguidelinesinregardstobreastexaminatiora. Scmesuflyparticipantsdidnotarawerqestiorathatappliedto than. Bymtansweringkeyqiestiaathatwereusedinscoring, 108 I' '! !' El! 5! ! Inadlitialtothelimitatiaa cited incapterI, the following limitatiaa have been identified whidl nay have affected the results ofthisstiriy: 1. 3. 4. 'nefomtimofttesubqestiaausedtoarawertheoverall researdlqestimandcreatetlequestiormaire,aswellasthe criteriausedforscoring,wasbasedupmthereseardler’s mderstaMimarflinterpretatimoftlel98SIISTaskForce guidelinesinregarcatoscreeningproceduresforthemis W. .flefi-eamosedIBughterHealthcareQestimiredidmt achresstleaqectofscreeningproceduresinregardsto'fibcposed dalghters and their families should have adeqnte explanation and oaaideratialofthephysicalamawtiaialaspectsofthis examinatim" (U.S.Departnartof HealtharriHunenServices, 1985, p. 22). ‘nlisareacculdencmpassaqestimireor interviewinandofitself. Anotl'eraspectofscreeningproceduresmtdealtwithinthe qestia'mairereferredtotl'eBSEtedmiqueusedbytheDES Winthepresartstudy. 'IhebreastexaminationofDES daughtersstmldcmfomwithclrrentNCIguidelines. ‘Ihe freqnlcyofscremingexaminatiorawasdetermired,buttheBSE tedmiqeusedwasnotexamined. 'Ihisanalysisnayhavebeen helpfulindeterminingifthe‘daughterisomformingtothe overallNCIguideliresinregardstobreastexaminatiora. Salesunyparticipantsdidmtarawerqaestiaathatappliedto than. Bjmtansweringkeyqestiorathatwereusedinscoring, 109 sale of the participants were eliminated when calculating the overallexbaittowhidl‘dalghtersreceivedthehealthcare recmmfledbytteFederalGovenmrt's‘TaskForoe. ‘nleaxawerstoopal-ariedqestiaaresultedinavarietyof respaaeswhidlinturnhadtobecategorizedbythereeearcher intonerageablegroups. 'necategoryintowmidltheresporaewas placedwastleinterpretatimoftleresearderwithout validatimofthisfrantherespaldent. Adisadvantageoftheneiledquestiamiremedinthissmdywas the inability to provide clarificaticn of questiora when needed. Questia'a dealing with specific examinatim sdledules in the qestimnaire may have been difficult for the respondent to arawerduetothefreqaerayandvariatimofexamination sdledulesmrerrultiple years. lIherefore, respotaesmayneedto be divided into specific tine frames. A naprobability sample was utilized for its cmvenience and eca'anical advantages. Prdaability sanpling would have been more representative of the populatim. The 118 population was difficult to access due to patients’ rights, lawsuits, and lack of hmledge that they were [IS-exposed. 'Besanpleforthisshflywasmadeupofpredmimntlywhite, midiletougerclassfeneles,whoseedu:aticnallevelarritotal familyiraanewereabovethegereralpqnlatim. Itnustalsobe reiteratedthatttesanpleinthissuriymayrepresentagmlp biasedtowardseekirqcare. 'IhesewmenknavoftheirDEB exposure, were nest representative of daughters highly interested intheiroondition,andtypify self-care agents. ‘Ihus,thestudy 110 sanplemaydifferintheextarttowhidlitcanbesaidto Wfle‘femelepopulatim. Inmry,tl'elimitatiaadisaasedinthissectimencanpass tinsefactorstlatreedtobecaaideredwmendevelopixganethodology forftmnereeeardlarrialsoneyinflumcehcwreslltscenbe interpreted. Adiitimal limitations regarding the instrument are diseased in the r'qalicatim of study sectim. lice In this section, the inplicaticxa of the study for nursing practice,edpatim,amfuturereseardlwillbepresented. 'Ihese ramifimtiaawillbedisaasedwithintreocncepblalfranework designed for this shay (see Figure 1, p. 17). W Inthisstudy,the‘daughterisvieaedasaholistic, interacting, and interdepement being with bio-psycho-socio—spiritual dimaicrapoesessinginlerentmrthanddignity. 'IhelESdaughter is adynamicbeingwhoiscartimallyintheprecessofgrowthand change. 'ne‘datghterexmangesinfomtimwithlerenviroment asslereceivesirprtandrespa'dswithbehavioralamrts. 'IheDES daugl'iterdioosestoagageingivenbetaviorsfrmarangeofoptiora based m her perceptiaa of the behaviors and of the cptiora available toher. healthofthedeaughterisdescrihedasherstateofmolenoss orintegrity. ‘Ihe‘daughter's plysical, psychological, interpersa'lal,ardsocialaspectsoflealthareiraeparable. Whenthe ESdaughteredqeriermsanintermptiminrerstateofhealth,she mllstpmttetealthcaresystentointervereinassistingherto 110 emplenaydifferinthemlttomidlitcanbesaidto represartthe‘faralepqnlatim. Inm,thelimitatimsdiscnssedinthissectimelmpass fineefactorsttatneedtobeoasidemddmdevelopirganethodology faflmnereseexdlamusomyinflwnetnwresultscnnbe interpreted. Adiitimal limitatia'aregardilgtheinstrumentare discussed in the i'eplicatim of sandy sectim. W In this section, the inplicaticrs of the study for nursing practice,eddeatim,ammlrezeeeardlwfl1bepresented. These mifiatimswillbedismssedwiflfintheomoepmalframework designed formisstlfly(seeFigure 1, p. 17). W Inthissmdy,the‘daughterisviewedasaholistic, interacting, amd interdepenient being with bio-psycho—socio—spiritual dimensiaispoesessingiimerentmrmmdignity. 'nlelISdaughteris adyrmnicbeirgunisomtimallyintheprocessofgrwthard marge. 'meHqu'rtereidmyeeinftimwifllhererwimment asdmereceivesirpltarfirespafiswithbehavioraloutprts. ‘IheDES deestoegageingivenbehavioxsfmarameoquions kmedmherpercqatiasofthebehaviozsardoftheqvtialsavailable toner. Healthofthemsmughterisdeecribedasherstateofmolms or integrity. The daughter’s physical, psychological, intelpezsaal,ardsocialaspectsofhealthareinsqaaxable. Whenthe ‘datghterexperiel‘msanintenuptiminherstateofhealth,she callstpmthehealthczmsystantointerveneinassistingherto 111 restoreemilibritmardadlieveheramhealthpotmtial. 'Ihehealth mmsystanmtinpartasstmemibilityforpxmoting, mtectirq,restori1g,andmeintainingthehealth of society’s fibers. M‘Wmanintegralmaflaeramthefomsofthe heelthoaresystan. 'nlelJESdmlghberhastherighttopaz-ticipatein thedetemimtimofthelevelofhealththatshewillattainor nintain. 'nlenlrse,asamafl3eroftllehealthcaretea1n,ixrtervelle£M the‘dauglrter'sabilitytoadaptisinpairedoratriskof imiment (i.e.,potentialself-oere deficit). 'Ihenurseis ounernedwith health prmntion, prevaatim of, orcareduring diminishedordmletedhealthstatesardassistarnetmardadfievaient of optimlhealth. 'Ihus, thegoal of rursirg isto facilitate adaptatimofthe‘daughtertmardheroptimlhealth,aniixmease herself-oarsompetalcies. mimmstaseesstheclient'smledgeoflsreooumded health care, aswell asherpmblen—solving skills arridegree of eelf-mmmtivatim.'memrsem13talsoevaluatethem8daughter’s degree of self-directim and cartrol of her learning experiences that willhaveaninpectmheradlievingthemommemedhealthcare. Her degree of self-care ooupetehcies ihflwioe her self-care abilities and behaViors. It is her inability to initiate self-care that requires the intervention of health care professionals. 'Ihemrseassiststhe‘daughterinevaluatingherprevials health care bdiaviors and expectaticms and how these behavior and expectationsareaffectingherwrrmthealthcnrepractioes. Also, the mrse assists the IIS daughter to develop problem-solving skills 112 ardcxpingstrategiestofilwiththeeffectsofheratposure. The nuseassistsflle‘daughterinbecaningedlmtedmthe {lysiological effectsardrisks ofpralatalexpoalretoDES;also,the nmee‘ihtome'theHdaughterottheI-aekmroereoomemed heelthoaretorthems-acpoeeddmgiter. 'melmowledgegaihedbythe ‘dmfiterwillirnmaseherself—oarecmpetanies. 'Ihenurseto amiaaemisgoalihteractsinterdepadentlywimuieclientamomer whereofthehealthoareteam. Inprractioe,therurseistofacilitateprimaryhealthcareto the‘pqmlatimushqthennsingpmoees. 'Ihemrsewill, if amrcpriate,havetheinitialocntactofthe‘daughterwiththe healthcaresystan. 'memrseslmldassmerespmsibilityand mutability for the ooordimtim, integratim, am oautimling magenentoftheUdaughter'stotalhealthoareahdservioee. Longituiiral are and follow-up of the daughter need to be provided. 'naenirsegathersdataregardihgthefmctimihgofthels W. 'memrsettmidentifiespzw1morneedsofthes Wintermofvhethershelacksmledge,mpacity,orwillto adapt. Positivehealthcarerelatedto‘euposm'eimhxles Wtothe‘hskf‘oroereoamfledhealthcnrecriteria: in havhdgeofmflerstmflimof‘mnemnaganenmandtreatnmlt cptims. nannseplametrategieswiththemdaughtertoassistherin level ofhealth. Strategies may include: developing an outline of theIISIaskamemomnerdedhealthcareinafomatthatallowsthe 112 anioqaingstrategiestodealwiththeeffectsofherexposure. ‘Ihe nuseassiststhe‘daughterinbeomihgeducatedmthe plysiologicnleffectsardrisksofpremtalexpomretofi;also,me nuseihfoms'theHdaughterofthe'laskForoereoamerded melanoareiEoi-thems-expoeeddmmter. 'nielmowledgegainedbythe ‘dmfiterwillilnreaseherself-mreompetacies. ‘Ihenurseto admimflfisgnlintemctsinterdqzdartlywiflatheclientarflother ubersofthehealthoareteam. Inpractice,themreeistofacilitateprimaryhea1thcareto theUpopulatimusingthemrsihgpmoees. 'Iherursewill, if appropriatehavetheinitialomtactoftheSdaughterwiththe healthcaresystan. 'memrseslmldassmnerespmsibilityaxfl mutability for the coordimtim, integratim, ard oartiming Wofthe‘daughter’stotalhealthcareandsewiws. minnmmmtollow-upofmeudaugmermedtohe provided. naenmgatimsdataregerdimthefmctimihgofthems W. 'Ihenxrsethenidentifiesproblaisorneedsofthe‘ Wintenaofvmemersheladtsmledge, capacity, orwillto adapt. PositivehealthoarerelatedtoIISexpomreixcluies Wtothe‘TaskForcereoamfledhealfllcnrecriteria: in hmledpofmdexstarflingof‘expoame,managamt,afltreament cptims. mumplametrategieswiththeudaughtertoassistherin level of health. Strategies nay include: developing an outline of theIISIaskaroereoamerdedhealthcaminaformatthatallowsule 113 “daughtertokeepdrecordofthehedlthcarereceivedarflresults ofthescrsem'ngexamindtim. ‘Ihislogwillbekeptclrrent, thus enablingthe‘ddughtertonmitorthecnreshe is receivingand facilitate adherence to recamded health care. Additional strategies include: ‘educating the daughter on the resources available in the cammity (i.e., “support group): reviewing and reinforcing ESE techniques with a breast model; and providing a visit for the DES daughter and/or her family for questions and concerns dealing with her DES smears. ‘Ihermrseevaluateswiththe‘ddughterthedegreeof adaptation achieved, and whether father application of the process needs to be employed. Throughout the nursing process, the nurse validates and plan with the IIS ddughter the ndulre and direction of intervention taken for her behalf. For the clinical nurse specialist (CNS) , the question which must be addressed is: Are daughters receiving the recommended health care in accordance with the Federal Garermnent's DES Task Force? Nurses in advanced practice possess the role characteristics necessary to provide and coordinate the specialized health care needed by the [IS population. 'Ihenursemustbepreparedtocqlewiththerealities ofdaily patient care. ‘Ihemlrseneextobeabletoidentifyardovercane barriers thatmdyocclrbetweenmrsesardothermembersofthehealth care team. The nurse needs tobeableito develop strategies to effectively handle conflict situatias and to facilitate effective lines of ccmmnication. A conflict situation may arise due to a difference in health care providers’ philosophies dealing with the 113 [Ideughtertokeeparecordoftherealthcarereceivedandresults of the screening examinatim. 'Ihis log will be kept current, thus enabling the DES daughter to writer the care she is receiving and facilitate adherence to recamerded tealth care. Additional strategies include: educating the daughter on the resources available in the commnity (i.e., “support group); reviewing and reinforcing ESE techniques with a breast model; and providing a visit for the DES daughter and/or her family for questions and concerns dealing with her DES exposure. 'Ihenurseevaluateswithtle‘ddughtertl'edegreeof adaptation achieved, and whether further application of the process reeds to be employed. W the nursing process, the nurse validates and plans with the ddughter the nature and direction of intervention taken for her behalf. For the clinical nurse specialist (CNS), the question which must beaddressedis: Are‘ddughtersreceivingtrerecamerdedhealth careinaccordancewithtleFederalGoverment’sDESTaskForce? Nurses in advanced practice possess tle role characteristics necessary to provide and coordinate the specialized health care needed by the 113 population. The nurse must be prepared to cope with the realities of daily patient care. 'Ite nurse reeds to be able to identify and overcome barriersthdtnayocclrbemeennnsesardotlermenbersofthehealth careteam. 'lhenursereedstobeabletodevelopstrategiesto effectively handle conflict situaticms and to facilitate effective lines of cammication. A cmflict situation may arise due to a difference in health care providers’ philosophies dealing with the 113 IISdaughtertokeepareccrdofttehedlthcarereceivedandresults of the screening examination. ‘Ihis log will be kept current, thus aldblingtheDESdaughtertonrnitorthecaresheisreceivingand facilitate adherence to recamalded tealth care. Additional strategies include: ~educating the daughter on the resources available in the camunity (i.e., S-support group); reviewing and reinforcing ESE techniques with a breast model: and providing a visit for the DES daughter and/or her family for questions and concerns dealing with her exposure. 'Ihenurseevaludteswithtte‘daughtertledegreeof adaptation achieved, ard whether further application of the process reeds to be employed. Throughout the nursing process, the nurse validates and plans with the daughter the nature and direction of intervention taken for her behalf. For the clinical nurse specialist (CNS), the question which must beaddressedis:Are‘daughtersreceivingtrerecame1fledhealth care in accordance with the Federal Government’s DES Task Force? Nurses in advanced practice possess the role characteristics necessary to provide and coordinate the specialized health care reeded by the IIS population. The nurse must be prepared to cope with the realities of daily patient care. 'Ihemrsereedstobeabletoidentifyandovercone barriers thdtmdyocclrbetweennlrsesardothernenbersof thehealth cereteam. 'Ihenursereedstobeabletodevelopstrategiesto effectively handle conflict siuldtia'e and to facilitate effective lines of camunication. A conflict situation may arise due to a difference in health care providers' philosophies dealing with the 113 lmdaughtertokeeparecordofthelealthcarereceivedandresults of the screening examination. 'Ihis log will be kept current, thus enablingthe DES daughtertomalitorthecareshe isreceivingand facilitate adherence to recamalded health care. Additional strategies include: educating the daughter on the resources available in the carnunity (i.e., “support group): reviewing and reinforcing ESE techniques with a breast model; and providing a visit for the DES daughter and/or her family for questions and concerns dealing with her DES exposure. Thenurseevaluateswiththe‘daughterthedegreeof adaptation achieved, and whether further application of the process reeds to be employed. 'Ihroughcmt the nursing process, the nurse validates and plans with the daughter the nature and direction of intervention taken for her behalf. For the clinical nurse specialist (CNS), the question which must be addressed is: Are daughters receiving the recamended health careinaccordancewithtleFederalGarerment’sDES'I‘askForoe? Nurses in advanced practice possess the role characteristics necessary to provide and coordinate the specialized health care needed by the 113 population. The nurse mst be prepared to cope with the realities of daily patient care. The nurse reeds to be able to identify and overcome barriers thatmdyocclrbeweenmrsesardotherneubersof the health careteam. 'Ihenursereedstobeabletodevelopstrategiesto effectively handle conflict situatims and to facilitate effective lines of communication. A cmflict situation may arise due to a difference in health care providers’ philosophies dealing with the 113 ‘daughtertokeeparecordoftlehealthcarereceivedandresults ofthescreeningexamindtion. 'nlis logwillbekeptclrrent, thus aldblingtheDESdaughtertommitorttecareshe isreceivingand facilitate adherence to reconnerded tedlth care. Additional strategies include: educating the daughter on the resources available in the catmmity (i.e., “-support group); reviewing and reinforcing ESE techniques with a breast model; and providing a visit for the DES daughter and/or her family for questions and concerns dealing with her exposure. 'Ihermrseevaluateswithtte‘ddughtertredegreeof adaptation achieved, and whetter further application of the process reeds to be employed. Throughout the mrsing process, the nurse validates and plans with the daughter the nature and direction of intervention taken for her behalf. For the clinical nurse specialist (CNS) , the question which must beaddressedis: ArelIdeughtersreceivingtherecamerdedhealth careinaccordancewithtteFederalGovermnent’s‘TaskForoe? Nurses in advanced practice possess the role characteristics necessary to provide and coordinate the specialized health care needed by the population. 'Ihenursemustbepreparedtocopewiththerealities ofdaily patientcare. 'Ihenursereedstobeabletoidentifyandovercane barriers thdtmdyocclrbetweenmrsesandotlermembersof thehealth care team. The nurse reeds to be able‘to develop strategies to effectively handle conflict situaticms and to facilitate effective lines of cammmication. A conflict situation may arise due to a difference in health care providers’ philosoglies dealing with the 113 ‘daughtertokeeparecordofthetealthcarereceivedandresults ofthe screeningexamindtion. This logwillbekeptcurrent, thus alablingtheDFdeughtertonrnitortlecareshe isreceivingand facilitate adherence to recamended health care. Additional strategies include: educating tle daughter on the resources available in the ccmmmity (i.e., mas-sipport 9mm): reviewing and reinforcing ESE technicpes with a breast model: and providing a visit for the DES daughter and/or her family for questions and concerns dealing with her DES exposure. Thenurseevaluateswiththe‘ddughterthedegreeof adaptation achieved, and whether further application of the process reeds to be employed. Thralghout tte nursing process, the nurse validates and plans with the [IS daughter the nature and direction of intervention taken for her behalf. For the clinical nurse specialist (CNS), the question which must beaddressedis: Are‘ddughtersreceivingtherecamendedhealth care in accordance with tle Federal Goverrment’s Task Force? Muses in advanced practice possess the role characteristics necessary to provide and coordinate the specialized health care reeded by the population. The nurse must be prepared to cope with the realities of daily patientcare. Thenursereedstobeabletoidentifyandoveroone barriersthdtneyoccurbetneennnsesardotlermeubersofthehealth careteam. Thenursereedstobeabletodevelopstrategiesto effectively handle conflict situatims and to facilitate effective lines of camuunication. A conflict situation may arise due to a difference in health care providers’ philosophies dealing with the 114 mndgelrentofcareregardinga‘ddighter. TheCNShewledgeable fendle may present literatne/firdings (i.e., 1985 DES Task Force Recamrerriatims) to the irriividudl with a differing philosophy. In order for the CNS to functim effectively, the client, as well ascthermenbersofttehealthcareteam, nustbefamiliarwiththe roleoftheCNS. TheCNSreedstodefineaswellastodefendthis role. How a CNS defires his/her limits and organizes his/her practice determinethedeqree‘of freedanandsuocessofagivenCNS. TleQISwithhis/herclinicalemertisecalldasame responsibility in performing the entire screening examination if adiitional training and certification to perform this examination were acquired. The researder feels amitiondl assessment courses and certification are leaded if the GB is to perform screening examinations, and that abnormalities should be inmediately referred to a physician krmledgeable in care. The CNS should continue to coordinate the daughter’s care and collaborate with the referred physician. The above-stated conditions are also relevant to the nurse midwife. ThediSneybeéralledupmtocomsellESdaughters regarding infertility and/or pregnancy problems. The CNS nust be familiar with infertility and the optiore and resources available for infertile couples. Today’s reproductive technology provide the possibility of artificial insemination and in vitro fertilization. The CNS must be canfortable with the carplelr medical, ethical, social, and legal inplications of artificial inseminatim and in vitro fertilization. TIeCNSshalldbeawareofccnmmityresouroestowhidlthesecouples 115 canbereferred forfurtherassistanoe. Also, theCNSshouldbeaware of the possibility that the daghter may experience grieving due to her inability to bear a genetic child. Anxiety may result from docunentatian of DES exposure without sufficient information abalt its significance or sequelae. Many exposedwunenaremrriedabmttheirsexudlself-imageard reproductive capabilities arrl fear the development of cancer. Any genital tract changes, e.g. adenosis, may cause undue concern unless the benign natures of the changes are explained. Therefore, it is important that sufficient time be allocated to provide information and to answer questions, responses to which wstbeappropriatetotleageofttepersonardexpressedin terns she can understand. Written materials, such as descriptions of the examinatian or drawings of dnanges associated with exposure, can be given to the patient when she arrives for her appointment, thereby allowing her time to prepare questions. (U. S. Department of Health arr! mnnan Services, November 1983, P- 9) It is inperative that the CNS understands how his/her practice either hinders or helps realm-related behaviors of the DES daughter. The E daughter rust be given the opportunity and responsibility for mkingdecisimnsregardingthemndgenentofherhealthcare. Increased ccupliancemay be seen when the health care provider has investedtimeanderergyintothecareofthe‘daughterandher familyinawaythathasdevelopedtrust, rapport, andasenseof continuity to the plan of care. The clinician must engage in teaching centeredaromrithehealthmdintenareeaspectrelatedtothisstudy 115 canbereferred forfurtherassistaree. Also, theCNSshouldbeaware of the possibility that the daughter may experience grieving due to her inability to bear a genetic child. Anxiety may result fron documentation of DES exposure without sufficient information abolt its significance or sequelae. Many exposedwonenareworriedaboxttheirsenmal self-imageand reproductive capabilities and fear the developnent of cancer. Any genital tract charges, e.g. adenosis, may cause undue concern unless the benign natures of the changes are explained. Therefore, it is inportant that sufficient tine be allocated to provide information and to answer questions, responses to which nustbeappropriatetotheageofthepersonandexpressedin terms she can understand. Written materials, smzh as descriptions of the examination or drawings of dnanges associated with exposure, can be givern to the patient when she arrives for her appointment, thereby allowing her time to prepare questions. (U. S. Department of Health and linen Services, Novonber 1983, P- 9) It is imperative that tle C16 understands how his/her practice either hinders or helps tealth-reldted behaviors of the DES daughter. Tie DES daughter must be given tle opportunity and responsibility for mkingdecisionsregardingtlemandgalentofherhealthcare. Increased colpliareemdy be seen when the health care provider has investedtineardenergyintothecareoftheDESdaughterandher familyinawaythathasdevelqnedtrust, rapport, andasenseof continuity to the plan of care. The clinician nust engage in teaching centeredarolrrlthehealthmaintendnceaspectrelatedtothis study 116 (i.e., DES Task Force recomenied tealth care and ESE techniques). such anticipatory guidance with eddn client encountered sholld begin with the initial contact and be reinforced with subsequent visits. Thus, tine for exchange of information and exploration of the DES daughter’s concerre are made available. TheCNSwhenprcvidingcaretotheddughtermst incorporate BSEinstructionsaswellasathoroighbreastexamindtion. Inthis study, breast examinations were performd in 21.9% according to omentNCIguidelinesregardimthefrequercyofscreening examinations. The‘ddughtershouldbe instructedregarding ESE techniques, aswellaswhentoperformm. Theinportance ofBSEand reinforcement of proper BE techniques by the health care provider slmldbeincorporatedintoeadn‘screeningexamindtion. TheDES daughter shoildbeawareofthemostozrrentNCIguidelinesregarding frequency and technique of breast examinations and use of nannnography. TheDEdeughter’sirereasedlomledgeoftheDEST‘askForce recmnerdedrealthcareardBSEtedmiqnswill resultintheDES daughtergainingconfidenceinmndgingl'erhealthcareard in practicing monthly ass. Thus, the daughter’s increased self-care colpetenciesmdyresultinincreasedcorpliancetotheDEST‘askForoe recormended health care. A CNS must acquire personal and professional credibility. One way credibility can be establishai is by "word of with" of satisfied clients who have used the (118’s services in the past for non-related [IS health problens, [ES health care, or counseling. The CNS must be seenasanexpertandtrustednmberofthehealthcareteam. Trust 117 isan inherentcharacteristic for effectiveteam functioning. This takes time and effort; itwill notbedltairedovernight. In advanced practice, marketing is a strategy professionals can utilizetobecorereoognizedandtodevelop clientele. Being ableto selloneselfasaCNSisinperativetohis/hersuccessandabilityto cbtainpersondlandprofessioelgoals. Marketingskillsmustbe adiedtotteinherentdnaracteristicsofadiS. Amarketingplanand qecific strategies should be developed. The CNS whose focus is in mn’shealthcanusehis/Iermrketingskillstoassistthe [IS-exposed female in the quest for positive health care. Public speakinghasmdnyoutcones: infernationdl,reedsassessments, public relations, increasedcomlmity hmledgeardawareness, andsupport forexistingand/orrewprograms. Publicspeakingcanbeusedbythe QBkaetimhis/tersldlls. ThelISissuecouldbeincorporated intoarealthseriesforardabortwmen.Theseprogranscolldbe meoredbycenters for wonen’s health, hospitals, or community awarenessgrorpswithtleCNSpresentirg:tIehedlthrisksdueto prenatalexposurertteDESTaskEorcerecomerdedrealthcare:arri resourcesavailableintleoommityforthesewonen. TheCNScould also incorporate speaking engaganents for nursing colleagues and other realthcareprofessions. The leadership abilities of the 08 will contribute to the DES daughteracquiringtterecomerdedrealthcareasadvocatedbyueDES T‘askForce. Inthisstudy,84.0% received lessthan50.0% ofthe IealthcarerecormendedbytteFederalGovernment’sDESTaskForce. Actiontodecreasethisdeficitofcarenustbetakeninaplanned, purposeful, and deliberate manner. The CNS reeds to identify possible 118 reasons (i.e., lack of 10ml” of health professionals and/or DES daughters, or lack of W ard/or provider’s skills in lB-related care) arrl inplonent phonon-solving nethods with the help of other health professionals. nemsdaughterismtreoeivixgthereoaunerdedhealthcere asadvocatedbythel985‘T‘askForce. Thehealthcareprovider lonowledgeableabmthreedstoemmtenotonlytteclientaboltthe effectsof‘exposurearrlreomnerrledl‘ealthcare, butalsoneedsto educate uninforned colleagues, arnd set up specific follow-up. Also, protocol forDEScareinaocordancewith lQBSmTaSkForce recomendations nust be establisl'ed for all health care settings. TTeCNSsholldbefamiliarwithresolrcesandwspecialistsin thecormnnitytowhonreferral forspecializedlnedlthcnrecanbe node. Manyl'ealthcareprovidersaremtfamiliarwiththeDESissle, ardthereforeareundbletoprovidetlequalitycaretheDES daughter requires. Offleiretlredfichugntersintl'estudy, 27.1%hadhealth insurancewhidn didnotcover‘exdminations, thusmakinglmowledge ofresources forthisgrolpofddughtersvital. TheCNSreedstobeawareofthe‘issueinordertoprovide corprehensive quality care to the farale population. The CNS must heepolrrentonnewdevelqnentsinereseardnandchangesin reoomendedhealthcare. ‘hdsaffectednotonlythewomenwhotook it and the offspring'exposed to inutero, but possibly the third gereration as well. Therefore, careful screening by health professionalsmlstbeperforuedtoidentifyworenexposedtoDES. Itsholldbecoreastarfldrdpractice fornursesatall levelsto ascertainfroufemdleswithintteagerangeofpossibleDESexposure 118 reasons (i.e., lack of knowledge of health professionals and/or DES daughters, or lack of eqnipnent ard/or provider’s skills in IIS-related care) and inplenent prdnlon—solving uethods with the help of other health professionals. 'IheDEdeughterisnotreceivingtherecomerriedhealthcare asadvocatedbytte1985mSTaskEoroe. Thehealthcareprovider hmledgeableaboItIESreedstoedmzaterntonlytheclientabolttle effectsofmexposureandreoomerfledtealthcare, butalsoneedsto educate uninformed colleagues, ard set up specific follow-up. Also, protocol forDEScareinaooorddreewith1985$TaskForce recomendations rust be established for all health care settings. TheCNS shouldbe familiarwithresourcesandDES specialists in theconmmitytowhonnreferral forspecializedhedlthcarecanbe node. Many health care providers are not familiar with the DES issue, andttereforearemndbletoprovidettequalitycaretheDESdaughter requires. OffleirnanredIIdeughtersinthestnriy, 27.1% hadhealth insurance which did not cover examinations, thus making knowledge ofresouress forthisgrolpofddujrtersvital. 'BeCNSreedstobeawareofthelISissueinordertoprovide conprehensive quality care to the fonale population. The CNS must keepolrrentonnewdevelqmentsin‘researdnarridnangesin reoormendedhedlthcare. IIShasaffectednotonlythewomenwhotook it and the otfspring‘exposed to in utero, but possibly the third gereration as well. Therefore, careful screenirng by health professionals mist be performd to ichntify wonen exposed to DES. It shouldbecoreastardardpractice fornursesat all levelsto ascertainfronfemdleswithintreagerangeofpossibleDESexposure 119 whetherthereisapossibilitythdttheyhavebeenexposedtoDES in utero. Since many of the [IS-exposed offspring are mostly asynptondtic, tle first prdnlonn consists of finding these clients. This information can-be obtained in a variety of health care settings (i.e., private physician’s office, clinic, hospital, or health fair). thrtilthemblicbeconesmorefullyawareoftheDESissue, itis inperative that all possible avenues for dissemination of information andscreenirgofthegereralpqnlationaremdde. Aspecidl qrestionndire slmldbecreatedandinclnxied inthe medical chart to screen for exposure. If at all possible, the m-exposed client and her mother should be questioned. A careful history should be taken that includes doomentation of rtedicine taken: if possible, this infernation should include the type, dosage, and duration of treatment. The health care provider, when taking a historyarriis informdthdtthefouale’smtherhadahistoryof miscarriages, troubled pregnancies, or spotting, should be alerted to theractthattheclientmayhavebeenexposedtobrs. Sincemdny fenalesdenotlmewoftleirexposure, thehealthcareprovidernust be alert to such clues. The CNS may also beoone innvolved in establishing and/or anpporting public redid canpaigns. This could be accomplished by the CNS who is knowledgeable about appearing on radio or television talk shows: screening and educating at health fairs; actively participating and supporting "U Awareness Week"; publishing of [IS-related articles annd research findings in medical annd nursing journals, as well aswonen’s magazines: speaking at hospital and clinic inservices; and participating in rnursing sonindrs. The 120 researdnerofthisstudywolldrepertthelargedeficit inreconnended healthcareorthemdaughter, andonphdsizethe1985DESTaskForce recomnended guidelines. Wonen’s lay literature (i.e., wonnen’s nagazines, newspaper articles, and nanonen’s newletters) could be used todissenindte informtionontle‘ isaetowonenofall age, ethrnic, annd socioecononic groups. Information in wonen’s lay literature wcnld be distributed throghoxt the country. For the CNS, thechallegeisprovidinginfornnationonthe‘issuetohealthcare colleagues, as well as to the public in a way that is both realistic yet nonthredtening. The CNS should be aware of policies which might be instigated in support of organizational , eoo'annic, arnd environmental factors having the potential to modify health bdnavior. The CNS should actively suglort annd inform clients of political efforts directed at the DES pepllation. An ecanple of a political effort directed at the DES pqnulation was a 1986 bill, H. R. 164 in the House of Representatives, and known as S. 169 in the Senate. It was a bill to provide matching Federal grants to states for public and professional education prograns. It would also allow states to establish screening centers, a [IS registry, and increase public ontredch. In snmmdry, innplications for nursing practice in the context of Oren’s self-caretheorywerepresented. Thenurse inadvannced practice, who possesses a conprehensive knowledge of the effects of [IS exposure, can optimally provide or coordinate the specialized healthcarereededbythe‘population. TheCNSnustbeassertive intakingonthisrole. TheCNSnusteducatehernminforned colleagues of the DES issue. The OS rust initiate the establishment 121 ofprotocelsinhealthcaresettingsthdtontlirethe1985DESTask Forcereconmerriedtealthcare. TheQBrmstbeawareofcommmity resolrcesavailableto‘ddnghtereforlealthcare,aswellas finaneidlassistancetoacquiretlereededl'ealthcare. A1so,theCNS mnstbeawareofGovermentlegisldtionoftheDESissue. Nurses at all levels of animation are responsible for screening thegeeralpepuldtionfor‘enqnosure. Thenursereedstodevelop arnd incorporate strategies to further develop self-care abilities arnd behaviorsinametivatedgroupof fanles (e.g., increasedfrequenncy omeandlemleneofreomnefledlealthcare). Thenursecan influencethetealth~careacqniredbyflneDESpopulatiom Nursing instructors, who are responsible for the education of undergraduate and graduate nursing students, or for continuing ednxzationprogransforrurses,nustinclnxleintheolrricllathe skillsreededformrsestoneetnewdemdndsasaresultofnrodern tednnelogyanddnangesinttefoonsofl'ealthcare. Thus, nursing ednmtorsnustpreparermrsestbneetthenewdenandsinrposedonthe mrsingprofession. Tte curricula in nursing education at all levels shonld irnclude tledisonssionofttehistoryof‘ecpesure,themestolrrent researdnfindilgs, therequiredhedlthcare forthispepulatien, and resonrcesavailabletothe‘fendle. Thenursennustbe knowledgeable about tle [IS issue if information is to be dispersed mgtlegereralpopllationaswellastoothermenbersofthehealth care team. The curriolla in rursing education of the baccalaureate arrigraduatedegreemrseetmldincludeoolrsesofhovtocorduct 122 nursing research. Nurses should be conmitted to life-log learning andkeepcdrrenttteirlemledgeandskills. Tte educational preparation of licensed rnurses varies. These nurses not only have varied educational preparation, but varied mtivationardskills forthecaretteygive. Thus, tneCNS should take this inrto consideration when planning strategies to inform musing colleagues of tl'e isoe. Thecurrionla shonldalsobedesignedtoassistthestudentto understand how they may influernoe the client’s decisions by the influence of the stndent’s own set of perceptions, attitudes, beliefs, and bendvior. The stndent’s belief regarding the role of the DES ddnghterinebtainingtealthcarecolld influencethedegreeof decision making the client is given. ‘Ihe student’s perception and degree of inportance given tle issnne will also influence the amount of information and reinforcenent given to the DES daughter. Ennflnasis shonld be placed on effectively using nursing diagnoses. For exanple when caring for tle DES daughter, the identified lack of lowledge may be the etiology of the nursing diagrnosis. An illustration of this hmld be in the following nursing diagnosis: nonconplianoe to ER secoddry to lack of lonewledge of technique resulting in a deficit in self-care. Nursing diagnoses are valuable in planning strategies and generating outcomes. Interdisciplinary education is a highly desirable and essential building-block for interdisciplinary practice. The quality of care reoeivedbythelIdenghterisaffectedbythefunctioningofthe interdisciplinary team. The role of the CNS needs to be clearly definedtotheclientandotlermenbersofthehealthteam. It isnot 123 the intention of the CNS to acqnire the physician’s responsibility for giving the conprehensive ms screening examination whenn medically indicated. AltlnngtntlneCNScanacqiireassessnnenntskillsnneededto perform screening examination, any changes or abnormalities noted world be referred to a physician specializing in 11‘s care for further evaluation. Insunmary, mrsingednmtionhasbeendiscussedinrelationto this surly. Nurses in advanced practice need to continue to contribute to research, and thus increase the scientific knowledge base fronwhich nursing emmtionandpracticearehnilt. WW Elication Qf m Thequestionnaireusedinthissuriyservesapioneering role for developing a more refined tool for future replication of this study. The following suggestions for revision of this instrument for future usewillmwbeexpoundedupon. RefertoApperdixDmnenreference is made to specific questions in the questionnaire. Theterm"DES-screeningexamination"appearednnottcbeaterm familiar to all us daughters. Therefore, instead of defining this term beyond the definition stated in the questionnaire, that is, "gynecologic examination" in the fear that it may skew the answers to relatedquesticns, itissnggestedinsteadtcrewcrdqnestionsina mmersudnflnatuneparticipantcantellwhattheexaminationshehad doneafterherlearningcf‘expcanreenntailed. Thiscouldbe acccnplishedbydnecldngalltheprcceduresthatweredoneatthis time. 124 Inreferencetotlneqnestionsdnereqnalitativeanswerssudnas, "other (please specify)", were used, it is strogly suggested that qnantitative choices be provided. It has been the experience of this researcher that although the informtion attained through this process hasann invaluableamnnntof knowlm gainned, it isextrenely diffionlt to analyze due to the participant's inability to provide a fconsedanswertcthestatedquestionandthemmberofvaried responses. Alsc,itamearedthattheparticipantsattinnesdidmt mflerstandthebasequestion,andthereforepmvidedananswerthat didnctaddressthestatedqnestion. A24-yearspanexistsbetweenthefirstandlastDESdaughter exposedinuterc. Fordaughterswholearnedoftheirecpcsureatu yearsofageorearlier,thel985‘T‘askForcerecounends: periodic screeningenaminationsshonldbeginatageucratthecnsetof menses, whichever is earlier, unless there is vaginal bleeding or discharge: bleeding or discharge should be evaluated without delay (U.S. Departmentcf I~Iealth&HunanServices, 1985, p. 22). Aquestioninguiringabonttheenamination of fenales, knownor suspectedofbeingS-ecpcsedmwereecaminedatayonngeragethan 14yearsandwhcsenennardnehadmtccon'red,srmldonlyhavebeen emined if vaginnal bleeding, spotting, or abnormal discharge oconrred. Anenaminnationatayongerageistlnenconsidered mndatcry. A question directly related to the occurrence of vaginal bleeding, spotting,crahnrmaldisdnargestmldbeaddressedin regarcb to periodic screening examinations of females known or suspectedofbeing‘ecpcsedunolmevcftheireqnosureatageuor earlier. 125 To address this criteria more effectively, it is reconnmended that asnallsectioncfthequestiomairebereferencedfcrtheseDES daughters. Questiosstmldincluie: ageatwhichtheyhadtheir first‘screeningexamination;agecfonsetcfmenses;andhadthey evereqnerienedbleedingmmnalpericdscradnangein minaldisdnargeandifso,didthisoconrbeforethefirstDES eminnationanndifso,msthisthereasonfortheinitialDES examination. Thus, the need to elicit informtion regarding menstrual periods anivaginnalbleeding/disdnargefrontheentirestudysanplewouldmt be warranted unless the researcher wanted additional information from whidntcdrawconclusicrscrtofcmflatehypothesesfcrfurther shriies.Iftheseareasweremtofinteresttothereseardner, adiitionalspacegairedfronrewvingthesequestionsconldbeusedto adiressctherareascfinterest. A richer understanding of the IE daughter' s satisfaction with herhealthcareprcviderwlnadministersherDEShealthcareneybe elicitedifalikert—typescaleforgnestionitéisusedinfuture cpssticnnaires. A correlation between satisfaction with health care provider, frequencywith whidnthehealthcareprcvideranswers qnestionsregarding‘ecpomreandadherencetotheiscreening examination schedule could provide a hypothesis regarding adherence to UTaskForcereconmendedhealthcare. Overall, the study participants did nnot have difficulty filling out Qnesticns #17 and #18. It is suggested that the category "other" be eliminated or specific choices be provided if the researcher is innterested in a predetermined area (refer to earlier discussion 125 To address this criteria more effectively, it is recommended that asnall sectionoftheqnestionnnairebereferenced fortheseDES daughters. Questions shonld include: age at which they had their firstlISscreeningexamination: ageofonsetofnmennses; anndhadthey cverecperiencedbleedirgmwstmalperiodsoramargein vaginaldisdnargeandifso, didthiscccurbeforethefirst DE": examinationanndifso, wasthisthereasonfcrtheinitial DES emination. 11118, the need to elicit information regarding menstrual periods anndvaginnal bleeding/discharge frontheentirestudysannple wouldnot be warranted unless the researcher wanted additional information fron whidntcdrawconclusioeortofomllatehypothesesforfurther stnrlies. Iftheseareaswerenotofinteresttctheresearcher, adiitional spacegainedfronrengvingthesequesticnscolldbeusedto address other areas of interest. A rider understanding of the daughter's satisfaction with terbealthcareprovixhrwhoadministersrerDEShealthcaremaybe elicited if a Likert-type scale for Question #6 is used in future questionnaires. A correlation between satisfaction with health care provider, frequency with which the health care provider answers (pestionsregarding‘exposure, andadherencetothe‘screening eminationsdednfleconldprovideahypothesisregardingadherenceto IFS Task Force recommended health care. Overall, the study participants did not have difficulty filling out Questions #17 annd #13. It is suggested that the category "other" be eliminnated or specific choices be provided if the researcher is interested in a predetermined area (refer to earlier discussion . 126 regarding”other"). 'nne"otl'er"answersprovided dealt mainly with laboratory tests and/or surgical interventions. The criteria stating that breast examinations of daughters sholldconfcrmwithonrrentNCIguidelinnesishardtoassessina qes‘tionnaire. ThenethodofSEusedbytheparticipantswasnot ascertained in this questionnaire. It is difficult to datain if participanmsareconformingtothemtedmiquesinaquestionnaire. 'nnisconldbeincorporatedinfuturereseardnperapersonal interview. Additional questioe which should be inncluded in the oestionnaire are: allergyto iodine (could explainwhya DES daughter is nnot receiving iodine staining); prior sexually transmitted diseases(esp.,herpesand/orhnmnpapilloma viruses),age at first inrteroourse,nnnnnberofsemalpartners(conldincreaseriskof cervicalcanncer);fannilyhistoryofbreastcancer;histcryof hysterectouy; annduse of birth control pills and/or other uses of estrogens. . FuturelISreseardersmywishtoineorporatethepersonal interview initially tohelp thendevelop their instrument, since much oftheneededreseardnhasmtprevioelybeenconducted. Oncethe innstrnnnenthasbeendevelcped,itmaybeadvantageonstomail oestiomeirestrmsenablingtlereseardertcobtainasanplingfron awiderrangeof geograpnicel locations. Iffundingispossible, a toll-freepnmemmnoercandhefurnishedfortheusebyrespondents where clarification of any questions on the questionnaire was needed. PublreDESreseardnersnnaywistntoincorporate Fender’s Health-Promotion Model to guide their study. Although the ans . 126 regarding"otner"). 'ne"otter"answersprovideddealtmainlywith laboratorytestsand/orsurgicalinterventions. me criteria stating that breast examinations of ms daughters sholldconformwithonrrentNCIguidelinnesishardtoassessina oestionnaire. Thenethodofmusedbytheparticipantswasnot ascertained in this questionnaire. It is difficult to obtain if participanmsareconfomingtotlemtedmiqmsinaquestionneire. 'nnisconldbeinncorporatedinfumrereseardnperapersonal interview. Additional questions which should be inncluded in the qestionnaire are: allergyto iodine (could ecplainwhy a DES daughter is nnot receiving iodine staining); prior sexually transmitted diseases(esp.,1erpesand/ornnnmanpapilloma viruses), age at first innteroolrse,nnmberofsemalpartners(colldincreaseriskof cervical cancer): family history of breast cancer; history of hysterectouynanduseofbirthcontrolpillsand/orotherusesof estrogens. ‘ nnturelESreseardersmaywiflntoincorporatetnepersonal interview initially to nelp thendevelcp their instrnment, sinnce lunch oftneneededreseardnhasnotprevionslybeenconducted. Oncethe inetrnmenthasbeendeveloped,itneybeadvantageoustomail oestionneirestlmseeblingtlereseardertoobtainasamplingfron awiderrangeof geographical locations. Iffundingispcssible, a toll-freefinoemmberconldbefurnisnedfortneusebyrespondents wlere clarification of any questions on the questionnaire was needed. mtureDESreseardersmaywishtoincorporatePender’s Health-Promotion Model to guide their study. Although the DES 127 dangnter fits well into Oren's self-care theory, tle researcher feels Fender’s Health-Prunetion Model may provide more of a basis for directingtteinterpretationoftnereseardnfindings. 'Ite health-promotion model is useful in explaining and predicting tealth-pronnoting behaviors. The health-promoting behaviors are categorized innto individualized perceptions, modifying factors, and variables affecting likelihood of action. The perceptions of the DES daughter that may affect ter decision-naking phase of health—promoting behavior (i.e., use of data) inclines rer important of health, perceived control, self-awareness, definition of health, perceived health data, and perceived beefits. These factors will influence the daughter’s readiness to egage in health-promotion behaviors. sociodenographic characteristics serve as modifying factors for health behavior. Previous experience with health—promoting action increases feelings of conpetence in following through with appropriate behavior. The [IS daughter who wtains a feeling of confort with howledgeedskillsneededtomnerDESecposurewillmore likely facilitate the implementation of health-promoting behaviors. Interactions with lealth profesionals can serve as an important factor in tle decision to engage in qnecific health behavior. Cues can trigger realm-promoting behavior (e.g. , mass nedia focusing on Sconce-ms). Theinteeityoftheoneneededtotrigger lealth-prcmotingactionswilldepenrlontnelevel ofreadinnessofthe IISdaughtertoegageinhealthprmotingbenaviors. Theabcve overview describes tle applicability of the tealth-pronnotion model to this study. Tiger- e 128 W Thisstnfiyservesasastegningstoeforfubnreresearch activities. The outcome of the study lays the foundation that is neededtoproceedtloahigherlevelofinquiry. Thereisadeficitin tlereconmendednealthcarereceivedbythestudysanple. Further researdncolldbeundertakentoeqnlainmflerlyingcausesforthis deficit. ‘Bnesbxlyoflealthandofttehunenpotentialforhealth 1‘ pronetionandneinteeneeisaninportantaspectofmrsingreseardn. Recommendations for funnre studies that will increase knnovfledge 5 oftheeffects of‘expoanreare: —Replicationandorfut1nrereseardnsteuldbeundertakentoreadna mrevariedstnriysanmleinregardstoincomeandeducationnal levels. ‘ ~Ashriytoascertainfron1ealthcareproviderswhatenamination procedurestneyperform rontinnely fortheir‘exposed clients —AstudytoascertainintleIISissueisaddressedinthecurricula of‘nnedicalstlldents. -Astudytoascertainintne‘issueisaddressedinthecurrionla ofnnursirgstnients. —Areseardnstudyinvestigatingwletnercarediffersfromonearea oftlecomtrytoamther. - A research study investigating if daughters are activated individualsinotherareasoftheirhealth. -Areseardnstudyaddressingtle‘da1ghter’s psychological areas ofconcernregardingalterationsinsemalityandthefearof cancer. 129 —Aresearchstlcyinwestigatingapossible linkbeoweentherate of endonetrosis and {ES exposure. -Aresearchstnniyinvestigatingapossible linkbeoweenearly lenqnause annd S. --Futurestudies fooeingontnehealthoarereceivedbyDES sonsand mothers. --Aonornnelities, otlerthanreprcductive, relatedtoexposuretoDFS -- mlatioehip (i. e., 113-related ah'crmalities, conpliance to annd knowledge of recomnded tealth care) between eqnosed siblings. and/ortminswlcarealsoprodnctsofpregnanciesduringwhich their ncthers took us. - Rate of miscarriages, and ectcpic and high-risk pregnancies among daughters versus the general pwulation. Trestrucunralanomaliesoftrevagina, cervix, anduterus in wonenexposedto‘havecaneedcocernabouttheirreproductive potential. In this study, 337 (50.3%) of the DES daughters reported the ability to coceive annd of these, 249 (73.9%) had at least one viable pregnancy. Of these 249, 155 (62.3%) gave birth to one child; 72 (23.9%) gave birth to two children: 15 (6.0%) gave birth to three dnildrenn; 5 (2.0%) gave birth to fonr children and 2 (0.8%) gave birth to twinns. A miscarriage was reported in 167 (49.6%) of the DES daughters who coceived (n = 337). A total of 293 knnown miscarriages was reported: 94 reported having 1 miscarriage; 42 reported having 2 miscarriages: 17 reported having 3 miscarriages: 9 reported having 4 miscarriages: 4 reportedhavingSmiscarriages; anndlreportedhaving 8 miscarriages. 130 Altlnnghaquestionwasnotincludedthataskedabontthe occnrreceofectcpicpregnancies, 57‘daughterswroteinasan adiitionalcomenntthattheyhadexperiecedanectcpicpregnancy. A total of 83 ectopic pregnancies was renorted: 37 reported having at least 1 ectopic pregnancy: 16 reported having 2 ectopic pregnancies, 2 renortedhavingB ectopicpregnancies; annd2 reportedhaving4 ectopic pregnancies. Tterefore, this researcher feels additional research in tleareasofmiscarriageandectcpicpregnancyshonldbepnrsued. Additional conlnennts were included in 266 (39.7%) of the 670 qestionnaires. (Refer to Appendix H for ecannples.) Of these, 115 (43.2%) dealt with ranoductive pron“ experienced by the DES daughter (i.e., trouble coceiving, innfertility, inconpetent cervix, preterm labor, miscarriages, ectopic pregnancies, and high-risk pregnancies). Also, of tl'e 266 daughters who wrote additional comments, 32 (12.0%) reported having a T-shaped uterus and 3 (01.1%) reported having a didelphic uterus. daughters reported having experieced endometriosis in 12 (4.5%) of tte adiitional coments. Urinary tract and kidney anomalies were reported by 6 (2.3%) in the additional comments. Includedinthiscountwasoedalghterwhonedthree kidneysanndanothermchadonlyoekidney; theirhealthcare providers stated it may be attributed to exposure. Thus, additional comments stated by tle ms daughters also inndicate future areas of needed research on issues. In summary, the professional nurse at the graduate educational levelneedstoacquireanddevelcphis/herreseardnskills, annd 130 Altl'cugnaquestionwasnotincludedthataskedaboutthe occnrreceofectcpicpregnancies, 57‘daughterswroteinasan additionalcomnentthattreyhadenperiecedanectopicpregnancy. A total of 83 ectopic pregnancieswas reported: 37 reported having at least 1 ectopic pregnancy: 16 reportedhaving 2 ectopic pregnancies, 2 reportedhaving 3 ectopic pregnancies; annd 2 reported having 4 ectopic pregnancies. Tierefore, thisresearder feels additional research in tteareasofmiscarriageancectcpicpregnancyshonldbepursued. Additional connmentswere included in 266 (39.7%) of the 670 ‘s 14 fins! I questionnaires. (Refer to Amendix H for examples.) Of these, 115 2‘- (43.2%) dealt with reproductive problems experienced by the DES daughter (i.e., trouble coceiving, infertility, inconpetent cervix, preterm labor, miscarriages, ectcpic pregnancies, and high-risk pregnancies). Also, of tle 266 daughters who wrote additional comments, 32 (12.0%) reported having a T-shaped uterus and 3 (01.1%) reported having a didelphic uterus. daughters reported having experienced ecometriosis in 12 (4.5%) of the adiitional comments. Urinary tract and kidney anonelies were reported by 6 (2.3%) in the additional contents. Includedinthiscountwasoedanghterwhohadthree kidneysanndanotherwhohadonlyoekidrey; theirhealthcare providers stated itmnaybeattributedto‘exposure. Thus, additional connents stated by dc daughters also indicate future areas of needed research on issues. In summary, tle professional nnurse at the graduate educationnal levelneedstoacquireanddevelophis/herresearchskills, annd 131 develop their role as a researder/ingnirer. Nursing-based research dealingvitthexposureneecstobeconducted. m InndnapterVI,asunmmaryandim:repretationoffindingswere presented. Limitations of the stndy were cited and inplications of tie study for nursing practice, education, and future researchwork presented. Orem'snncdelofself-carewasusedastheconceptual framancrkfcrthissudyandwasinclldedintl'ediscussionfor nursingpractice. 'nnefindingsinthisstndyindicatethatthereisa deficit in the extent to whidn danghters received the health care recomendedbytheFederachvernmnt's‘TaskForoe. Further research needs to be undertaken to explain underlying causes for this deficit so that attention an be focused in these areas. 131 develop tleir role as a researd'er/inquirer. Nursing-based research dealingwith-sexposureneedstobeconducted. m In-ChapterVI,asmmeryandintrepretationoffindingswere presented. Limitations of the study were cited and implications of the stndy for nursing practice, education, and future researchwork presented. Orem'snncdelofself-cerewasusedastnecoceptual frannenncrkfortlnisstndyandwasinclndedintledisonssionfor nursingpractice. Tnefindingsinthissundyindicatethatthereisa deficit in the extent to which daughters received the health care recommendedbytteFederalGovernlnent's‘TaskForoe. Further research needs to be undertaken to explain Ln'derlying causes for this deficit so that attention can be focused in these areas. 131 develop their role as a researder/inquirer. Nursing-based research dealingwithmexposurneneedstobeconducted. m In-ChapterVI,asnmmaryandintranetationoffindingswere presented. Limitations of the stndy were cited and implications of the stndy for nursing practice, education, and future researcher prsented. Orem’sncdelofself-onrewasusedasthecoceptual franenorkforthisstudyandvasincluiedinthediscnssionfor nursingpractice. 'nnefindingsinthissudyindicatethatthereisa deficit in tle extent to which daughters received the health care reconuendedbytlel-‘ederalGoverment's‘TaskForce. Further reearch needs to be undertaken to explain underlying causes for this deficit so that attention can be focused in these areas. 131 develop tleir role as a researder/inguirer. Nursing-based research dealingwithmexposureneedstobecorrnucted. m In-CnnapterVI,asumaryandintrepretationoffindingswere presented. Limitations of tle sudy were cited and inplications of the strdy for nursing practice, education, and future researcher presented. Orem'snnodelofself-cerewasusedasthecoceptual Wforthisstndyandwasincludedintnedisonssionfor nursingpractice. Ttefindingsinthisstndyindicatethatthereisa deficit in the extent to which daughters received the health care recomnededbytleFederalGovernment'sIEST‘askForoe. Further research needs to be undertaken to explain underlying causes for this deficit so that attention can be fooeed in these areas. APPENDICES APPENDIX A 1985 Task Force Recommendations Screening [IS mlghters APPENDIX A 1985 Task Force Recomnedations Screening Daughters Periodic screening examinations should begin at age 14 or at the oeet of meees, whichever is earlier, unless there is vaginnal bleeding or discharge: bleeding or discharge enculd be evaluated without delay. Exposed daughters and their fanmilies should have adequate explanation and consideration of the physical and emotional aspects of this eraminnation. The screening procedure shculd inclide a thorough pelvic examination using careful palpation (feeling), cytology test (the Pap or Papanicolaou snear) , and tissue inspection including the use of one-half stregth aqneous Ingol’s (iodine) solution for cervical and vaginal staining (Nonstained areas of the vaginna may indicate adenosis) . Minimally, DES daughters shonld be examined at least once a year, with nmore frequent examinations doe for mnen with extensive of atypin epitnelial changes (e.g. , widespread adenosis or associated epithelial change) . Use of a colposcope (an instrument for examination of vaginal and cervical tissuesbymeansofmagnifying lenses) isnot requiredat every examination of daughters. Oolposccpy should be utilized 132 APPENDIX A 1985 Task Force Recommendations Screening [hughters Periodic screening examinations sholld begin at age 14 or at the onset of menses, whidnever is earlier, unless there is vaginnal bleeding or discharge; bleeding or discharge should be evaluated without delay. Ebcposed daughters and their fannilies should have adequate enplanation and consideration of the physical and emotional aspects of this examination. 'Inescreeningprocedmeshculd includeathoroughpelvic examination using careful palpation (feeling), cytology test (the Pap or Papanicolaou snnear) , and tissue inspection including the use of one-half stregth aqueons Iigol’s (iodine) solution for cervical and vaginal staining (Nonstained areas of the vaginna may indicate adencsis) . Minimally, DES daughters should be examined at least once a year, with more frequent examinations doe for woten with extensive of atypical epithelial changes (e.g., widespread adenosis or associated epithelial change) . Use of a colposcope (an instrument for examination of vaginal and cervical tissues by means of magnifying leses) is not required at every examination of daughters. Oolposcopy should be utilized 132 133 (a) in all cases where abrcrmal cytology (Pap smear) is observed, (b) in cases of extesive or widespread epithelial changes (such as squamous metaplasis), and (c) where feasible as part of the initial examination. It must be recognized that colposcopy may be a relatively expesive procedure, and most physicians do not have colposcopesortlespecialtrainingneededfortheiruse. Manyof thednangeswhidncanbeobservedwithttecolposcopeandcanalso be detected by use of the must simpler and less traumatic techniqne of iodine staining. Biopsies should nct be doe routinely, but enould be reserved for special indications sch as abrcrmal Pap tests or other evidece of significant epithelial aocrmalities. In addition, breast examinations of DES datghters should confornm with current National Cancer Institute guidelines. (U. S. Department of Health and Htmnan Services, 1985, pp. 22-23) APPENDIX B [ISAD Project Protocol Ebnamination and Canceling of Daughters APPENDIX B IISAD Project Protocol mm AND W (F lamination Tne gynecologic examination of a “exposed female is similar but more detailed than a routine pelvic examination. The examination used in the mean project is ontlined below. men changes characteristic of the 113-exposed pqulation are present, the physician may wish to consult a gynecologist familiar with the details of evaluation and followup of ms-egosed individuals. Orthrofcynecolcgichalinetionfa'mnchsedto‘ inUtero -Vu1var Inspection --Vaginal and Cervical Palpation (Digital) -Vaginal and Cervical Inspection (Speculum) —Cytology (Separate Slides of Vaginal Fornices and Cervix) "001130600917 (Wtioml) -Iodine Staining of Cervix and Vagina -Biopsy of Atypical Finding -Binmanual (Recto-vaginal) Domination InepectionoftteVulva Nodnangesofthevulvahavebeen associated with DES exposure. If the patient is extremely young and the hymen unusually tight, tcpical application of an anesthetic jelly or spray may reduce discomfort curing initial dilatation. If the hymen permits passage of tle index finger, the examination may usually proceed if pediatric instrnments are used. Patients should be encouraged to use tampons during menstrual periods as this facilitates subsequent examination. 134 APPENDIX B HEAD Project Protocol moi AND mane W Eminetim The gynecologic examination of an “exposed female is similar but more detailed than a rontine pelvic examination. The examination used in the new project is ontlined below. When changes characteristic of the DES-exposed pcpnlation are present, the physician may wish to consult a gynecologist familiar with the details of evaluation and followup of [IS-exposed individuals. mofeynecolcgicminetimfmmmedtom‘s inUtero —Vulvar Inspection -Vaginal and Cervical Palpation (Digital) -Vaginal and Cervical Inspection (Speculum) —C.Ytology (Separate Slides of Vaginal Fornnices and Cervix) -Oolposcopy (Optional) -—Iodine Staining of Cervix and Vaginna —Bicpsy of Atypical Findings -—Bimannual (Ream-vaginal) Domination InspectionoftheVulva Nochangesoft‘nevulvahavebeen associated with IE exposure. If tle patient is extremely young and the hymen unusually tight, topical application of an anesthetic jelly or spray may reduce discomfort during initial dilatation. If the hymen permits passage of the index finger, the examination may usually proceed if pediatric instruments are used. Patients should be ecouraged to use tampons during menstrual periods as this facilitates snmsequent examination. 134 135 alpationoftheVagina Palpationoftnevaginaisacrucialpart of the IIS examination and occasionally provides the only evidece thataclearcelladenocarcinaoispresent, especiallywhenthetumor is located beeath an inntact mucosa. Tne finger used for palpation shonld be moistened with water rather than lubricant jelly in order ncttoruintlecytolcgicspecimnswtainedsubsequently. Theentire length of the vagina including the fornices should be carefully assessed. wringpalpation, vaginalridgesandotherstructural changes of the cervix may be noted. Areas of thickening or induration sholld aronse suspicion and be sampled by biopsy. Speculum Domination After palpation, a bivalve speculum of amropriate size is inserted into tl'e vaginna. The Graves speculum is most commonly used. In virginal feoles, a pediatric Graves or a Pedersonspeculummaybeeffectivewhentlestandardspeculumistoo shorttopermiteominationoftleentirevagina includingthe fornices. Warm water, not jelly, should be used for lubrication dnnring insertion of tle speculum. Dncess mucus, which is sonetimes presentintheDES-etposedwonen, stcnldbegentlyremovedwitha saline moistened cotton swab. Tie epithelial surface of the vagina must be carefully inspected. 0n nnaked eye eonminations adenosis, which is the presence of glandular epithelium or its secretory products in the vaginna, may appearredandgranularorbeinvisible; andareasofsquamous metaplasia, which is newly formed squamcus epithelium and usually dnaracterized by a low content of glycogen, may be indistinguishable in color from areas of ncrmel squamrus epithelium. During inspection, 136 thespeculmmsholldbegentlyrotatedasitisbeingwithdrawnin ordertoassosstheentiresurfaceofthevaginna. cytology 'Ihesecretionsardepithelimintheupperthirdofthe vagina should be thoroghly sampled with a wood or plastic spatula; the middle or lower third of the vagina should be similarly sampled if grossly visible nucosal dnanges are evident. The spatula should be rotatedarolrdtheentirecirumferegeofthevaginalfomioesand the material transferred prmptly to a slide and placed immediately in fixative. Asecondsanple snnndbeobtainedfraotheeraooervical canalandectooervix. Aspirationoftheexternalosisonemethodof samplingtheendocervical carnal. 'nnisprooeduresholldbefollowedby ascrapeoftheectooervix. Colpwopy Oolposoopy, if performed, should always be done before iodine staining. The dnief benefits of colposcopy are accurate assessmntoftheexbentofuneepithelialdnargecmtheoervixara vaginaarrithedetectionofareaslikelytodisclosethemostabnormal chargesonbiopsy. Colposoopyhasmtprcvedessentialinthe detection of clearoell adennocarcinnola, bothbecausethetumordoes nothaveaspecificvasollarpatternanrialso,becauseonrare occasion,atmmorisentirelyintramralanridoesnotinvolvethe mucosa. Ingeneral,oolpoeocpyisco*sideredatpresenttobe optional in the routine screening and followup of DES-exposed daughters,hntofimportanoeifanahnonnalcytologicsmearis encountered. IodilneStaining Iodinnestainingofthevaginnaandoervixoonfirnms the boundaries of the epithelial changes observed by colposcopy, or inflicatesthosebomiarieswhencolposoopyhasnotbeendone. If 136 thespeonlnmmshouldbegentlyrotatedasitisbeingwithdrawnin ordertoassesstheentiresurfaceofthevagina. (.ymlogy 'nnesecretiosandepitheliumintheurperthirdofthe vagina should be thoroghly sampled with a mod or plastic spatula; the middle or lower third of the vaginna ennuld be similarly sampled if grossly visible mucosal charges are evident. 'Ihe spatula should be rotatedaromritheentireciromfereeeofthevaginalfornioesanfl the material transferred prolptly to a slide and placed immediately in finetive. Aseconrisampleshonldbedntainnedfronltheendocervical canalandectooervix. Aspirationoftheexternalosisonemethodof samplingtheendooervical canal. 'Bnisprooednnreslnonldbefollmredby ascrapeoftheectooervix. mlposcqny Oolposccpy, if performed, should always be done before iodine staining. The dnief benefits of colposcopy are accurate assessmentoftheextentoftheepithelialdnargesontheoervixand vagineanrithedetectionofareaslilcelytodisclosethemestabnonmal changesonnbiopsy. Colposoqnyhasmtprovedessentialinthe detection of clear cell adenocarcinoma, bothbecause the tumor does nnot have a specific vascular pattern annd also, because on rare occasionatnnmorisentirelyintranmralanfldoesnotinvolvethe nicosa. Ingeneral,oolposcopyisoonsideredatprosenttobe mtionalintheroutinescreeninganrifollowupofDES—exposed dalghters, but of importance ifanah'ormel cytologic smear is encountered. IodineStaining Iodinestainingofthevaginnaanrioervixoonfirms the boundaries of the epithelial changes dserved by colposcopy, or indicates those boundarieswhencolpoecopyhasnotbeendone. If 137 cclposcopyhasbeenperformed, tleiodinestainof dnoiceis half—stregth Ilgol's solution (half—stregth is 2.5 percent iodine with 5 percent potassium iodide in water). Otherwise, Schiller’s iodine solution is preferable (1 gram iodine and 2 grams potassium icdideinBOOmnl. water). Beonusetleiodinestainsonlythenormal (highly glycogenated) squanns epithelium that lines the vagina and thecervix, lesionswithinttewallcannotbedetected. 'I‘oevaluate thetissuesafterstaining, thespeollnmmiswithdrawnagain, after which it is reinserted for bicpsy, if indicated. Reinsertion may be facilitated by lubrication with jelly to conpesate for the dehydrating effect of the iodine. Indicatioefchiqsy Biopsyisperformedwlnenthevaginaor cervixis induratedorgramlar, containsapalpablenodule, has discreteareasofadifferentcolorortexturethanthesurrom'ding tissue, or discloses highly atypical colposcopic findings. mindom biqnsies of nostaining areas are nnot recommended sinnce they rarely disclose neoplastic or preeoplastic lesions. Use of ferrous smasulfate (Mosel's- solution), silver nitrate, or gelfoam with tampos after biopsy may facilitate hemostasis. Bimnal Examination Bimnual examination should include eminationofthevaginaandrectumandisperformedintheusual manner. DminetionSdedule Examinationof femaleslonownorsuspectedof being “-exposed should begin following menarche or by the age of 14 yearsifthemenardehasmtocolrred. Enaminationatayoungerage is not advised, mless vaginal bleeding, spotting, or abnormal discharge occurs; then it is considered mandatory. Examination under anesthesia is rarely necessary. 138 'Beintervalbebdeenenaminationisdeterminedonanindividual basis. For mnost patients yearly examinatios are adequate. Women with vaginal adenosis were initially seen more frequently at the DESAD Project centers, altl'nghmstncwareseenanmally. Subsequentexaminatiosareperformedasontlinedaboveand inclnde palpation, inspection, cytology, and iodine staining. Attentionsholldbefoosedontlednangesdservedsincetneprevious evaluation. While cervical cytology is reconmeded on an annnual basis, snmearsfromthevaginacanbeonitted ifthereareno epithelial changes in the vagina. Wonen should be questioned about interval bleeding or~aonorma1 discharge. fixation and counseling Anxiety may result from documentation of exposure without sufficient information about its significance or seqelae. Manyexposedn‘menareworriedabonttheirsexual self-image and reproductive capabilities and fear the developnent of cancer. Anny genital tract dnanges, e.g. adenosis, may cause undue concernmnlessthebenignnaulresofttednangesareexplained. 'nerefore, it is important that elfficiert time be allocated to provide informationandtoansmrqnestions, responsostowhichmust beappropriatetotneageoftlepersonandexpressedintermsshecan understand. Written materials, sudn as descriptions of the enaminnation or drawings of changes associated with exposure, can be given to the patient when she arrives for her appointment, thereby allowing her time to prepare qnestios. (U. S. Department of Health and Human Services, 1983, 1.3). 7-9.) APPENDIX C Pilotsunerstinmire APPENDIX C '-mm “TIMINIME A vast ruler of American wo-en received Diethylstillnestrol (DES) during pregnancy in the belief that it would prevent aiscarriaoes, ”“8 resulting in exposure of a large nulber of sons and daudnters. the health care of these individuals needs to be carefully monitored. This study will colpile infomtion on the health care of fighters who know, or nine think, they are DES-exposed. The following questiomaire is an isportant first step in mitoriro the health care being received by the DES-exposed daughter. Your responses, as DES chmhters, will provide a crucial “first look“ and can help to alert the scientific omity of possible areas of needed research or deficits in health care. we hope you will help with this project. Participation is freely voluntary. If you consent to participate, please fill out and return the onstionnaire. This onstiomaire should take approximately 20 sinutes to couplets. If you need extra roan, use the cement section or oiditional sheets. 00 NOT put your new on the oestionnaire or identify yourself in any way. Results of this study will mpsar in an lecoaing issue of DES Action Voice. thank you! PLEASE serum NO LATER THAN MEMBER 29th, 1986 QUESTIOIIAIIE Race (Check one): ( ) Unite ( ) Black ( ) American Indian ( ) Hispanic ( ) Other (please specify) 2. Age (write in): 3. Education (Circle hionest level cwletsd): 12345678 9101112 1311.1516 17181920 (Grmr School) (Hidn School) (College) (Graoete School) lo. total Family lrncoae (Check one): ( ) Less than $9,999 $10,000 to $11.,999 $15,000 to $19,999 $20,000 to $24,999 " $25,000 to $49,999 $50,000 or more “AAA“ vvvvv a ‘0 5. llave you given birth. to any children? (Check one) ( ) Yes If yes, nunber of children ( ) No 6.. .Have you had any miscarriages? (Check one) ( ) Yes If yes, how no»? _ l ) No - 139 140 7. Do you have health insurance? (Check one) () Yes " ( ) No if 13, does your health imuronoe cover your DES ex-Ininations? (Check one) ( ) Yes ( ) No 8. Are you a DES-exposed dsudnter (i.e., did your nether take Diethylstilbestrol (DES) while pregnant with you? (Check one) ( ) Know for sure ( ) Think I on - - not verified bynsdical rscorcb ( ) Don't know 9. liow were you informed that you were exposed to DES? (Check one) ( ) Letter or phone call fro. nother's physician ( ) informed by mother ( ) Diagnosis by physician throdn onysical exuination ( ) Other (please specify) 10. Have you tried to obtain ndical records to verify DES exposure? (Check one) ( ) Yes ( ) No 11. Does your physiciann annswer mestions you have regarding DES exposure? (Place a check in the appropriate space on the scale) I l I | I ' I S 6 3 2 1 Always Alnost always Soutines Rarely Never 12. At mat age did you learn that you were a DES daudnter? (write in) 13. Do you have menstrual pen-10¢? ( ) Yes - ( ) No If m, at shat £2: did you start your lenstrnnl period? (write in) 14. Have you ever had a DES-screening exuinnstion? () Yes () No If m, at ntnat age did you have your first DES-screening examination? (write in) F Yw AN T 1 P T OlESTION 25. 15. was a colposcopy (an exoaination ming a manifyim instrunent) done on your irst DES examination? “A ) ) égii 16. 3 e had your first DES-screening examination, was a screening examination e a year? i : AA vv z-< O 141 ELQSE ANSLER THE FOLLWING OJESTIOIS A§ RELATED TQ THE HEALTH CARE YClJ HAVE IVE SINCE 197 . 17. 18. 19. m. Now oftenn does your physician recurs! you to return for DES examinations? (Check one) ( ) Every six mnths ( ) Once a year ( ) More than one year quart (Specify freqnncy: _) Now often do you see a unysician for DES exainations? (Check one) ( ) Every six months ( ) Once a year ~ ( ) More than one year apart (Specify freonency: _) f you are currently seeing a physician more than once a year, please specify eason for this? (Check as mony as amropriate) Abnormal Pm smear Indicated by results of iodinne staininng Indicated by results of colposcopy Indicated by results of biopsy Physician did nnot specify reason Other (Specify: ) AAAAAAH _ vvvvvv At your DES examinnations, unich of the followinng procedures are routinely being done? (Please check all that are amropriate) ALHAYS SWETIMES NE R ‘ [£1115 gnimtjgg; my gxanimtion. Pq: war: a test in ulnich cells are genntly scraped from the cervix annd put onto a slide to be gained under a microscggg. Iodine stainim: a test nlnich uses a dilute iodine solution ntnich is amlied to the vggina and cervix Colposcopy: on examination usinng a colposcope (Iagnifying device) to look at cervical and vaginal cells.- The colposcope does not touch the gtient curing the exam. Biopsy: removal of a call piece of tissue with a surgical instrunnent for examination in order to helg estdnlish a diamis. MW”: 21. During your routinne DES emination, does your onysician ask you if you have experiennced vaginal bleedinng m nonstrual periods? (Place a check in the appropriate space on the scale) ' I ' ’ | | l l S In 3 2 1 Always Almost always Sonstimes Rarely Never During your routine DES examination, does your physician ask you if there has been a change in your vaginal discharge (i.e., increase in amount, change in color, or change in odor)? (Place a check in the appropriate space on the scale) I l I l I 5 In 3 2 1 Always Almost always Sometimes Rarely Never 142 23. If you have experienced vaginal bleeding Mm nonstrual periods or a change in vaginal disdnarge, Hnat action did your physiciann take7: (Specify) 24. Nave you ever had an dnnoml Pqn suar? (Check one) ( ) Yes ( ) No (If nno, skip to (pestion 25) If 3;, please conplete the following table: (List the most recent abnnormal Pap near first and thenn move across the calm and cchete yes or no for each of the categories) Ahnornl Pap Smear was Iodine was a Colposcopy was a Other procedure(s) (gagg) Staining done? dong? M? (specify) 1. ( ) Yes ( ) Yas ( ) Yes ( ) Yes ( ) No ( ) No ( ) No l ) No 2. ()Yes ‘ ()Yes um ()Yes ( ) No ( ) lo ( ) No ( ) No 3. ( ) Yes ( ) Yes ( ) Yes ( ) Yes ( ) No ( ) No ( ) No ( ) No 25. Do you perform self-breast exninatioi montth (Check one) ( ) Yes ( ) No ( ) Not routinely, but do check on occasion 26. Does your physician examinne your breasts at least once a year? ( ) Yes ( ) No ( ) Not routinely 27. Nave you ever had a mgrqnhy (breast )I-ray)? (Check one) ( ) Yes ( ) No If yes, please state at ndnat age and my: ENTS: PLEASE RETURN “STIMAIRE TO: Louise Pointkowski RN ---. - --st Street Uyondotte, Michigan 48192 APPENDIX D APPENDIX D ‘ sum m “TI on: MIME The objective of the following onestio'lnsire is to seek information isportant for mnitorira the health care received by DES-exposed dandnters. YoJr responses, as DES daughters, will provide a crucial "first look“ annd con help to alert health care researchers to possible areas of neechd research or deficits in health care. He hope you will help with this project. Participation is voluntary. If you consent to participate, please fill out and return the onestio'naire. Results of this study will qpear in an (pconim issue of £5 Legion Vgig. mm This onestiovnaire should take qproxintely 20 nimtes to coplete. Place a check nrk in the mpropriate boxes. If you need extra rooa, please use the consent section or additional sheets. DO IDT put yon: n-e on the (pestio'naire or idenntify yourself in my way. Thank you! PLEASE REM No LATER TNAN m 21st, 1”? IUESTIOIIAIRE 1. Are you a DES-exposed dsudnter (i.e., did your nether take Diethylstilbestrol [DESI while pregnant with you)? (Check one) ( ) Know for sure ( ) Think I on - - not verified by medical records ( ) Don't know 2. Now were you inforned that you were encased to DES? (Check one) Letter or phone call from mother's health care provider Informed by nnother Diagrnosis by health care provider throndn onysical examination Other (please specify) “AAA VVUU 3. Nov ave you tried to obtain ndical records to verify DES exposure? ( ) Yes ( ) No In. At that gag did you learn that you were a DES dsudnter? (write in age) 5. Does your health care provider onswer onestions you have regarding DES exposure? (Check one) ( ) Always ( ) Almost always ( ) Sometines ( ) Rarely ( ) Never 6. Are you satisfied with you- health care proviar nine administers your DES health care? ( ) Yes ( ) No 7. Nave you ever had a DES-screeninu emination (i.e., gynnecologic examination)? ( ) Yes ( ) No If m, state 993 you had your film DES-screening exanination? (Hrite in age) _ P III 8.1)” a colposcopy (an exnination wing a nonifyim instrunnent) done on your frj rs; orsec secgg DES emination? ( ) Yes ( ) No 9. Onnce you had your first DES-screening emination, was a screening examination doneat least onceayear? () Yes () No C (OVER) 143 144 ANSIE THE F Tli HA W- 10. 11. 12. 13. Now often does your health care provider race-end you to return for DES examinations? (Check one) ( ) Every six months ( ) Once a year .( ) More than one year apart (Specify fremsncy: ) ( ) Other (please specify) _ Now oftenn do you see .a health care provider for DES exuinations? (Check one) ( ) Every six months ( ) Once a year ( ) More than one year apart (Specify freonncy: ) ( ) Other (please specify) __ If you are currently seeing a health care provider oars than once a year, please specify reason for this? (Check as may as Qpropriate) ( ) Abnormal Pap smear Results of iodine staining Results of colposcopy Results of biopsy Nealth care provider did nnot specify reason Other (Please specify: ) “AAA“ VVUVV At your DES examinations, ndnich of the following proceoares are m being done? (Please check the mpropriate box for each procednre) M'T Mmmm ms bimanual xami Pm snar: a test in which cells are gently scrqned from the cervix and put onto a i t examined under microsc . Iodinne staining: a test which uses a dilute iodine solution which is amiied to the vagina and cervix Colposcopy: on examination using a colposcope (signifying device) to look at r cervical annd vaginal cells. The colposcope does nnot touch the W. Biopsy: removal of a small piece of tissue with a ~ surgical instrunnent for examination in m: 39 help establish g gignosis. Other procedure“) (please specify): 14. 15. 0 During your routine DES examinnation, does your health care provider ask you if you have experienced vaginal bleeding MST—M mennstrual periods? (Check one) ( ) Always ( ) Almost always ( ) Smtins ( ) Rarely ( ) Never During your routinne DES ex-imtion, does your health care provider ask you if there has been a change in you- vaginal discharge (i.e., increase in unnomt, change in color, or change in odor)? (Check one) ( ) Always ( ) Almost always ( ) Sometimes ( ) Rarely ( ) Never- 145 16. If you have experienced vaginal bleeding mm menstrual periods or a change in vaginal discharge, inst action did your health care provider take?: (Please specify): 17. Nave you ever had an dxnormal Pm snar? (Check one) ( ) Yes ( ) No (If nno, gig to anestion 10) l ) Don't Know (If don't know, M to anestion 18) If m, please couplete the following table: (List the mat recennt dnnonnnal Pap near, giving your amroxinte m or the m; of occurrence; and thenn move across the colnnns annd comlete 'yes', "no", or "don't hnow'I for 92¢ of the categories) Abnornl PapSmesr was Iodinne wasaColposcopy wasa Other procedure(s) W? m2 WW” 1. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No ()Don'tK_ng ggmvgmgzmqgmgzgm'ymow 2. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No ()MQMW 3. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No (LM'ILWDL— 10. Nave you ever been told by you- health care provider that you have had changes in the vaginal lining/tissue (i.e., epithelial changes, dysplasia, adenosis)? (Check one) ( ) Yes ( ) No (If :3, skip to Omstion 19) ( ) Don't Know (if don't knnow, skip to Nestion19) If 139,, please conplete the following table: (List the most recennt vaginal tissue cinanges, giving your amroxinte m or the mg of occurrence; annd thenn move across the colunns annd comlete “yes“, “no", or 'don't know“ for £031 of the categories) Tissue Changes was Iodine wasaColposcopy wasa Other procedure(s) tin ifv) 1. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No ()Donn'tang ()Don' ' 'thw 2. "()Yes ()Yes ()Yes ()Yes ()No - ()No ()No ()No ()Don't ' ' 't 3. ()Yes ()Yes ()Yes ()Yes ()No ‘()No ()No ()No ()Don'tKnog () ' ' ' 19. Naveyougiven birth toannychildren? (Check one) () Yes If yes, nnunberofchildren () No (OVER) 9., ‘sn-O a 138 'nneintervalbemeenexaminatimisdeterminedonaninxiividual basis. For most patients yearly examinations are adequate. Wonnen with vaginal adenosis were initially seen more frequently at the DESAD Project centers, althcujnmstnovareseenammally. Subsequentenaminationsareperformedasmtlinedaboveand include palpation, inspection, cytology, annd iodinne staining. Attention slmld be foamed an the dnarges observed since the previous evaluation. While cervical cytology is reoomnenfled on an annual basis, snearsfrunthevaginacanbeonitted ifthereareno epithelial changes in the vagina. Wannen should be questioned about interval bleeding or‘ahnormal discharge. fixation and annealing Anxiety may result fron documentation of exposure without mfficiant information about its significance or seqaelae. Manyexposedwonnanareworriedabonttheirsexual self-image annd reprodnctive capabilities and fear the development of cancer. Any genital tract changes, e.g. adenosis, may cause undue conernmflessthebenignnamresofthednangesareexplained. 'Iher'efore, it is inpor‘tant that sufficient time be allocated to provide informationandtoarswerquestions, responsestowhidnnust beappropriatetotheageofthepersonanxiexpmsedintemsshecan understand. Written mterials, such as descriptions of the examinationordrawingsofdnangesassociatedwith exposure, canbe given to the patient when she arrives for her appointment, thereby allowing her time to prqnare questions. (U. S. Department of Health and Hanan Services, 1983, pp. 7-9.) APPENDIX C Pilotstnnygnstimnire APPENDIX C en-mma IEALTICKWIME A vast number of American woolen received Diethylstilbestrol (DES) daring pregnancy in the belief that it would prevent eiscarriagee, the resulting in exposure of a large umber of sons and (hunters. The health care of these individuals needs to be carefully monitored. This study Hill capile infomtion on the health care of fighters Hno knou, or who think, they are DES-exposed. The following questionnaire is an ieportant first step in mitorim the health care beim received by the DES-exposed daughter. Your responses, as DES damhters, Ilill provide a crucial “first look“ and can help to alert the scientific calamity of possible areas of needed research or deficits in health care. He hope you will help with this project. Participation is freely voluntary. If you consent to participate, please fill out and return the cpestionnaire. This questionnaire should take approximately 20 einutes to couplete. if you need extra roon, use the covalent section or additional sheets. Do NOT wt your n-e on the onetionnaire or identify yourself in any way. Results of this study Hill qapear in on upcoming issue of DES Action Voice. Thank you! PLEASE REM NO LATER rm Wk 29th, 1986 IUESTIOIIAIIE Race (Check one): ( ) Unite ( ) Black ( ) American Indian ( ) Hispanic ( ) Other (please specify) 2. Age (write in): 3. Emcation (Circle highest level comleted): 12345678 9101112 13161516 17181920 (Granular School) (Hidn School) (College) (Graduate School) 6. Total Fanily Income (Check one): ( ) Less than $9,999 ( ) $10,000 to $14,999 ( ) $15,000 to $19,999 ( ) $20,000 to $26,999 " ( ) $25,000 to $49,999 ( ) $50,000 or more a ‘e 5. Have you given birth. to any children? (Check one) ( ) Yes If yes, m:- of children ( ) No 6.. -uave you had any miscarriages? (Check one) ( ) Yes If yes, hoe um _ ( ) No ~ 139 dc.‘ 7. 140 Do you have health insurance? (Check one) ( ) Yes ‘ i ) No If 13, does your health immense cover your DES exninations? (Check one) 10. 11. 12. 13. 1‘. 15. 16. ()Yes ()No Are you a DESaexposed Mter (i.e., did your nether take Diethylstilbestrol (DES) while pregnant with you? (Check one) ( ) Know for sure ( ) Think I an - - not verified byeedical reconh ( ) Don't know How were you informed that you were exposed to DES? (Check one) ( ) Letter or unone call fro. nother's physician ( ) informed by another ( ) Diagnosis by physician throudn plnysical exaaination 1 ) Other (please specify) Have you tried to obtain nedical records to verify DES exposure? (Check one) ( ) Yes K ) No Does your physician answer nations you have regardirg DES exposure? (Place a check in the appropriate space on the scale) I l l l ' l S a 3 2 1 Always Almost always Soutim Rarely Never At shat age did you learn that you were a DES daudnter? (write in) Do you have menstrual perioo? ( ) Yes - ( ) No If m, at what as did you start your eenatrml period? (write in) Have you ever had a DES-screening exaeination? ( ) Yes ( ) No if m, at what age did you have your first DES-screening examination? (write in) FYWAN T T 14 PT T0125. was a colposcopy (an exunination ining a unifying instrunent) done on your irs DES examination? Yes 110 Once you had your first DES-screening examination, was a screening examination done once a year? 7. 140 Do you have health insurance? (Check one) ( ) Yes ‘ ( ) No if m, does your health insurance cover your DES exuninations? (Check one) 10. 11. 12. 13. 16. 15. 16. ()Yes ()No Are you a DES-exposed deuflnter (i.e., did your anther take Diethylstilbestrol (DES) while pregnant with you? (Dneck one) ( ) Know for sure ( ) Think I an - - not verified by eadical recor¢ ( ) Don't know llow were you inforaed that you were emosed to DES? (Check one) ( ) Letter or phone call froa mther's physician ( ) informed by another ( ) Diagnosis by physician throndn physical exuination 1 ) Other (please specify) have you tried to obtain eedical reoorch to verify DES exposure? (Check one) ( ) Yes ( ) No Does your physician answer qnestions you have regarding DES exposure? (Place a check in the appropriate space on the scale) I I I I ' I 5 I. 3 2 1 Always Almost always Soutiaes Rarely Never At what age did you learn that you were a DES daudnter? (write in) Do you have menstrual perioth? ( ) Yes - ( ) No if m, at what m did you start your eenstrml period? (write in) Have you ever had a DES-screenino emination? ( ) Yes ( ) No if m, at what age did you have yon: m; DES-screening examination? (write in) in Y0.) mgggg :52 19 55mm 1k. '3 1: n9 gsnou 25. was a colposcopy (an elimination (sing a manifying instrunnent) done on your first DES examination? ( ) Yes ( ) llo Onnce you had your first DES-screening exnination, was a screening examination done once a year? ( ) Yes i ) No 141 gag ”4ng THE FOLLWIHG QESTIOIS E RELATED TO THE HEALTH CARE YOJ HAVE WED SINCE 1978. 17. 18. 19. Now oftenn does your physician recmnd you to return for DES examinations? (Check one) ( ) Every six nonths ( ) Once a year ( ) More than one year apart (Specify fraonency: ) Now oftenn do you see a pnysician for DES ex-inations? (Check one) ( ) Every six eontlns ( ) Once a year - ( ) More than one year apart (Specify freonency: ) If you are currently seeing a physician aore than once a year, please specify reason for this? (Check as .ny as appropriate) Abnnormal Pap sneer Indicated by results of iodinne staininng Indicated by results of colposcopy Indicated by results of biopsy Physician did not specify reason Other (Specify: ) AARAAA vvvvvv At your DES examinations, finish of the followinng procedures are routinely being done? (Please check all that are anaropriata) ALUAI§ SWET IMES NEVER , Pglyig gaimgjm; ml gxamination. Pan war: a test in shich cells are gently scraped froa the cervix annd put onto a slide to be gained under a microscgg. Iodine staining: a test which uses a dilute iodine solution which is amlied to the ku Colposcopy: an exanination using a colposcope (ngnifying device) to look at cervical and vaginal cells.- The colposcope does not touch the atient (trim the exam. Biopsy: reeoval of a small piece of tissue with a surgical instrunnent for examination in order to 21. ” l establish a die is. WWW During your routine DES exaeination, does your physician ask you if you have experienced vaginal bleeding mm menstrual periods? (Place a check in the appropriate space on the scale) ' | ' ' I I I I 5 I. 3 2 1 Always Almost always Sonatina Rarely Never During your routinne DES emination, was your mysician ask you if there has been a change in your vaginal disclnarge (i.e., increase in anomt, change in color, or change in odor)? (Place a check in the amropriate space on the scale) I I | I I 5 l. 3 2 1 Always Almost always Sonatina Rarely Never ‘2": .fi 2‘. 142 If you have experienced vaginal bleedim thr than aenstrual periods or a charnge in vaginal discharge, Unat action did your physician take?: (Specify) Have you ever had an annormal P» mar? (Check one) ( ) Yes ( ) No (If no, skip to cpestion 25) if yes, please conplete the followiru table: (List the ant recent abnormal Pap near first and then move across the coll-l and cwlete yes or no for each of the categories) Almornl Pap Smear Has Iodine Has a Colposoopy Has a Other procedure(s) taini done i ? (wify) 1. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No 2. ()Yes ‘ ()Yes ()Yes ()Yes ()No ()No ()No ()No 3. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No 25. Do you perform self-breast exaaination monthly? (Check one) ( ) Yes ( ) lo ( ) Not routinely, but do check on occasion 26. Does your physician examine your breasts at least once a year? ( ) Yes ( ) No ( ) Not routinely 27. Have you ever had a mamgraphy (breast x-ray)? (Check one) if 115, please state at that age and any: ()Yes ()No 1’ AL ENTS: PLEASE REM «ESTIMAIRE to: Louise Pointkowski Ill ---- - --st Street Uyandotte, Michigan 48192 APPENDIX D APPENDIX D ‘ au-aom m “I. can assume: The dnjective of the followim mtiosnaire is to seek information iaportant for mnitorirg the health care received by DES-exposed daudnters. Your responses, as DES cbughters, will provide a crmial ”first look“ ad can help to alert health care researchers to possible areas of needed research or deficits in health care. we hope you will help with this project. Participation is voluntary. if you consent to participate, please fill out ad return the westiomaire. Results of this study will amear in an oncoming issue of DES Action Vgig. m This mastiovnaire should take amroxintely 20 mimtes to cwlete. Place a check ark in the anpropriate boxes. if you need extra row, please use the connent section or additional sheets. 00 NT put you- nus on the (pestiovnaire or identify yourqu in any way. Thank you! PLEASE RETURN NO LATER THAN mm 21st, 1”? CUE‘I’IOIIAIIE 1. Are you a DES-exposed daudnter (i.e., did your aother take Diethylstilbestrol [DES] while pregnant with you)? (Check one) ( ) Know for sure ( ) Think l as - - not verified by medical recorcb ( ) Don't know 2. how were you informed that you were exposed to DES? (Check one) ( ) Letter or phone _call fro. mther's health care provider ( ) informed by mother ( ) Diagnosis by health care provider thrown physical examination ( ) Other (please specify) 3. Have you tried to obtain ndical records to verify DES exposure? ( ) Yes ( ) lo 4. At unat age did you learn that you were a DES daudnter? (write in age) 5. Does your health care provider answer (pestions you have regarding DES exposure? (Check one) - ( ) Always ( ) Almost always ( ) Sometimes ( ) Rarely ( ) Never 6. Are you satisfied with you health care provider tho achinisters your DES health care? ( ) Yes ( ) lo 7. Have you ever had a DES-screenirg eminetion (i.e., gynecologic examination)? ( ) Yes ( ) Io if 13, state age you had your flat DES-screenim examination? (Urite in age) _ W 8. was a colposcow (an exnination ining a mifyim instrment) done on your first or m DES ex-ination? ( ) Yea ( ) lo 9. Once you had your first DES-screenim emination, was a screening examination doneat least onceayear? () Yes () No (oven) 143 144 ANSiER me F0 T nu E You HAVE W- 10. Now often does your health care provider recouad you to return for DES examinations? (Check one) ( ) Every six months i ) Once a year _( ) More than one year anart (Specify freonncy: ) ( ) Other (please specify) 11. Now often do you seea health care provider for DES exuinations? (Check one) ( ) Every six months ( ) Once a year ( ) More than one year mart (Specify freqmcy: ) ( ) Other (please specify) 12. if you are currently seeim a health care provider mre than once a year, please specify reason for this? (Check as any as Qpraniate) ( ) Abnormal Pap smear Results of iodine stainim Results of colposcopy Results of biopsy Health care provider did not specify reason Other (Please specify: ) “AAA“ UVUUV 13. At your DES examinations, dnich of the followirng procsckres are m being done? (Please check the wiate box for each procacknre) I Don't m 5 501611116: .mm PMS Pelvic mimfim: bimmal gxaminatim. PQ suar: a test in dnich cells are gently scrwed from the cervix ard put onto a my; to be examined under microscgg. iodine stainim: a test mich uses a dilute iodine solution which is mlied to the vagina and cervix Colposcopy: an examination usira a colposcope (unifying device) to look at * cervical and vaginal cells. The colposcope does not touch the Wan—.— Biopsy: remval of a sail piece of tissue with a surgical instrunent for examination in m: 59 help establish a diagnosis. Other procedure“) (please specify): 14. During your routirne DES examination, does your health care provider ask you if you have experienced vaginal bleedirq Man mtrml periods? (Check one) ( ) Always ( ) Almost always ( ) Sometins ( ) Rarely ( ) Never 15. During your routine DES exuination, does your health care provider ask you if there has been a change in you- vaginal discharge (i.e., increase in amount, change in color, or charge in odor)? (Check one) ( ) “"5” ( ) Almt alum ( ) Soutimes ( ) Rarely ( ) Never- 144 AHSlER THE F0 W H TH Yw HAVE W- 10. 11. 12. 13. Now often does your health care provider reco-and you to return for DES examinations? (Check one) ( ) Every six annths ( ) Once a year '( ) More than one year apart (Specify freonncy: ) ( ) Other (please specify) iiow often do you seea health care provider for DES eminations? (Check one) ( ) Every six months ( ) Once a year ( ) More than one year apart (Specify freouncy: ) ( ) Other (please specify) if you are currantly seeim a health care provider m than once a year, ”-4 please specify reason for this? (Check as any as mpropriate) ( ) Abnormal Pa) swear Results of iodine stainim Results of colposcopy Results of biopsy .1. Health care provider did not specify reason w Other (Please specify: ) “AAA“ VVVUV At your DES examinations, dnich of the following procetknres are rgtinely beirng done? (Please check the wists box for each procechre) .mmm W5 M'T PeLvi c : biannual xami Pa) snar: a test in dnich cells are gently scrmed from the cervix and put onto a mg; to be examined under microscgg. iodine staining: a test ntnich uses a dilute iodine solution which is agiied to _t_he vagina and cervix Colposcopy: an examination usirng a colposcope (mgnifying device) to look at ‘ cervical and vaginal cells. The colposcope does not touch the gtient (trim the exann. Biopsy: reaoval of a small piece of tissue with a ~ surgical instrument for examination in org: 39 1'1ng establish 9 giggnosis. Other procedire(s) (please specify): 14. 15. During your routine DES examination, does your health care provider ask you if. you have experienced vaginal bleedirg m menstrual periods? (Check one) ( ) Always ( ) Almost always ( ) Sometimes ( ) Rarely ( ) Never During your routine DES emination, does your health care provider ask you if there has been a change in you- vaginal discharge (i.e., increase in annount, change in color, or change in odor)? (Check one) i ) Always ( ) Almost always ( ) Sometimes ( ) Rarely ( ) Never. 14s 16. if you have experienced vaginal bleeding 95M aanstrual periods or a charge in vaginal discharge, inst action did you- health care provider take?: (Please specify): 17. Nave you ever had an mml Pm suar? (Check one) ( ) Yes ( ) No (if no, gk_ig to Nestion 18) ( ) Don't Know (if don't know, 313 to Onestion 18) if 131, please conplete the following table: (List the most recent anornal Pap smear, giving your approxinte m or the m; of occurrence,- ad then move across the calm ad comlete I'yes", “no", or 'tbn't know- for 8% of the categories) Alrnonl PapSmear was iodine NasaColpoacopy liasa Other procedure“) Aggegr Sgginim Q93? ”1 [in n? (mify) 1. ()Yes ()Yes ()Yes ()Yes ()No ()No ()No ()No ()Don'tKrgg SIMH'KMSSMSIMSKMIIMS 2. ()Yes ()Yes ()Yes ()Y ()No ()No ()No ()No ()W 3. ()Yes ()Yes ()Yes ()Y ()No ()No ()No () (LDon'tKrg (J ' ' ' 18. have you ever been told by you- health care provider that you have had changes in the vaginal lining/tissue (i.e e., epithelial changes, dysplasia, adenosis)? (Check one) ( ) Yes ( ) No (if 3, skip to Question 19) ( ) Don't Know (if don't know, skip to Onestion 19) if 3;, please couplets the following table: (List the most recent vaginal tissue cinanges, giving your amroxinte m or the M of occurrence; and then move across the calm and cosplete “yes”, "no", or 'don't know“ for gggh of the categories) Tissue Changes was iodine was a Colposcopy Has e Other procedure“) Aggflgg: Stginim m2 m1 Elm ML (specify) 1. ()Yes ()Yes ()Yes ()Yes ()No ()No ( ) Ii ( ) No ()Dm’t ' ' K )Oon't Know 2. "()Yes ()Yes ()Yes ()Yes ()No . ()No ()No ()No ()Don'tm ()M'tWL 3. ()Yes ()Yes ()Yes ()Yes ()No '( )No ()No ( ) No ( ) Don'tKng! ( ) ' ' Know 19. Nave you given birth toanychildren? (Check one) ( ) Yes if yes, nndner of children () No (OVER) “In. 5 146 20. Nave you had any miscarriages? (Check one) () Yes if yes,hoomany_ () No 21. Doyouhave (or everhad)manstrual perioth? () Yes () No if m, at shat ggg did you start your unstrml period? (write in) 22. Do you perform breast self-ex-inetiom monthly: (Cineck one) ()Yes ()Mo ()Motroutinely,h.ntmcheckonoccasion 23. Does your health care provicbr ex-ins you- breasts at least once a year? (Check one) ()Yes ()No ()Notroutinely 24. Nave you ever had a muogrdny (breast )i-ray)? ( ) Yes ( ) No if m, please state at inst age ad any: The next set of (sections is backgroud inforntion that will contribute to understading the results of this stuiy. 25. Ethnic Grow (Check one): ( ) ilnite ( ) Anrican irdian ( ) Black ( ) Hispanic ( ) Other (please specify) as. Age (write in) 27. . Eoncation (Circle hidnest level mleted): 12345678 9101112 13141516 17181920 (Granular School) (iiidn School) (College) (Graduate School) 28. Marital Status (Check one) () Single () Married () Separated () Divorced () widowed 29. Total Family income (Check one): ( ) Less than $9,999 ( ) $20,” to $24,999 ( ) 310,1!)0 to $14,999 ( ) 325,1!)0 to $49,999 ( ) $15,000 to $19,999 ( ) sso,ooo or more 30. in unat £23.! do you currantly reside? (Nrite in) 31. Do you have health insurance? ( ) Yes ( ) No if m, does your health insurance cover your DES exninations? ( ) Yes ( ) Mo W: PLEASE RETURN MSTTWIRE TO: Louise Poi ntkowski RN P. O. Box 375 W192 This research study is a partial remireunt for the capletion of a Master of Science in Nursing degree fra the College of Nursing, Michigan State University. APPENDIX E Operational Definitions of Recamnerded Health Care E- 21. APPENDIX E I. Initia ° 0 odic ' Eacaminations 1. Ftrflmemdamahoweretoldoftheir mdmirgptnerty, ampericdicscteenirg examinatinsbeflgdmebegimnimatageuorat flneaaetofmhhidnevm'isearlier)? AtwhatgedidymleamthatywwereaDESdaughter? (Writeinage) Have you ever had a im-screenirg enamination (i.e., gynecologic examination)? ‘() Yes () No Ifyge, stategyouhadymrfLEtIIB—screeningexamination? (Writeinage) _ OnceymhadymrfimtS-screeningexamination,wasa screeningexaminationdoneatleastonceayear? ()Yes ()No Doyouhave (oreverhad)mesnstrualperiods? ()Yes ()No Ifyes, atwhatmdidymstartycurmerstmalperiod? (Writein) Wm m: 2. mammiyimflnewiate minimally imlnxhs a tlmugh pelvic examination usirgcarefulpalpatim, cytologytest, ardtissne ixmectimixnlnflixgflneuseofone-halfstretgth Agnoslnpl'ssolutimforcavicalandvaginal 13. At your DES examinations, which of the following procedures are minely being done? (Please cineck the appropriate box for each procedure) “'1' .mmmm WES 12,111; m‘ tion: bimanual exam Papsnear: atest inwhichcells gently scraped from the cervix and put onto a slide to be examined W. Iodine staining: a test which uses a dilute iodine solution which is applied to the vagina and cervix. 147 148 III, m. tionSchedulg M13: 3. Ate‘damsbeimenminedatleastonea year? 9. Onceyouhadycnrfirsts-screenixgexaminaticn,wasa screeningexamimtiondmeatleastonceayear? ()Yes ()No 11. i-icxvoftendoymseeahealthcareprovider forDESexaminations? (Checkcne) () Waysixnunths () Onceayear . () Morethanoneyearapart (Spec1fyfrequency: ) () Other (pleasespecify) W: 4. mmmmimtinsbeimdoeform wifinattaaiveatypimlqaiflnelialdnnges? 11. How often do you see a health care provider for DES examinations? () () Morethanoneyearapart (Specifyfrequency:__) () Other (please snowy) 12. Ifywamamntlyeeeimahealthcareprovidermrethanonce ayear, please specifyreasonforthis. (Checkasmanyas ammpriate) Abnormal Pap sneer Resflts of iodine staining Results of colposcopy Results of biopsy Health care provider did not specify reason Other (Please specify: ) AAAAA vvvvvv m: 5.a. Ismlpwapybeimutilizedinallcassm 17. i-iaveymeverhadanahnonnalpapsmear? (Checkone) () Yes . () No (Ifm,fi1;iptoQue5tion18) () Don'tKnow (If don't m,&ptoQuestion 18) Abnonnal PapSnnear WasaOolposccpy Mr date}..— 1. ()Yes ()No mm 2. ()Yes ()No MW 3. ()Yes ()No ”Doom 149 W: 5.1). Ismlmbeimutilizedin-aeaofextansive chepiflnelialdnatges (smhassqnamns ntaplma)? 18. I-iaveyoueverbeenboldbyycurhealthcnreproviderthatyou have had dnarnge‘s in the vaginal lining/tissue (i.e., epithelial charges, dysplasia, adenosis)? (Check one) () Y6 () No (Ifno,§l_r.iptogiestim19) ( ) Don’t Know (If don't erJw, skip to Question 19) Tissue Changes WasaOolposccpy 1W amel— vvv va P’s-av L----At-- Egiggiggfi Mg: 5.c. IsMbeimutilizedinflneinitial sanitation (fartnselimnhta)? 8. Wasacolposccpy (an examimtionusingamagnifying instrument) donemyourfiifiormummtim? ()Yes ()No W W: 6.3. Ambiqajmbeimpezfonmddmirdicabedby magnate? 17. Haveyoueverhadanahnormalpapsmear? (dneckone) () Y6 () No (If no, guptoouestim 18) ( ) Don'tKnow (If don't lam, giptoouestion 18) Abnormal PapSnnear Wasa 1. ('1' pvvcvvcvv 555‘? r; “AA “AA “A“ [.4 150 My: 6.b. Hebiqaisbeimperfamdannflx-zreisother 18. evidece of significant qnithelial atnoualitms? Haveymeverbeentoldbyymrhealthcarepraviderthatyou have had changes in the vaginal lining/tissue (i.e., epithelial dnanges, dyqolasia, adenosis)? (Check one) () Yes () No (Ifno,§]siptoouestio119) () Don'tlmow (If don't lam, skiptoQuestion 19) ‘Tissue merges Wasa W— 1. ()Yes ()No Hm 2. ()Yes ()No (1mm. 3. ()Yes ()No “mm W m: 7. Atetn'eastenn-ixatiasof‘daufitetsbeixg 22. 23. 24. perfouadmdixgtofineamnttiationalmrmr fistimtegmhlimsregardixgthefreqncyof Mac-imam? Do you perform breast self-examinations earthly? (Check one) () Yes () No ()Notroutinely,butdodneckonoccasicn Doasycxarhealthcazeprcviderexamineymrbreastsatleastonce ayear? ((heckone) () Yes () No ()Notrontinely Have you everhad ammgranny (breast X-ray)? () Yes (I No If yes, please state at what. age and why: 19. 20. 25. 26. 27. 28. 29. 30. 31. 151 AreyonaiIS-expcseddatghter (i.e., didyonrmothertake Diethylstilbestrol [S] while pregnant with yon)? (Check one) () Krncwforsnne () ThinkIam--notverifiedbymedicalrecords () Don'tkncw MmmyoninfOImedtlnatyonwemenutpcsedtoiIS? (Checkone) () Letterorfinnecallfxonnmther'shealthcareprovider ( ) Infcnmed by mother () Diagnosisbyhealthcareptoviderthronghpnysicalexam () Other (pleasespecify) HaveyontriedtocbtainmedicnlrecoxdstoverifinSexposure? ( ) yes ( ) NO Doesyonrhealthcarepzovideranswerqlmticnsyonhave regardingiISexpcsure? (Oneckone) ()Always()A1nnstalways()Sonnetimas ()Rarely()Never Are yon satisfied with yon' health care provider who administers your ass health care? ( ) yes ( ) no Have yon given birth to any dnildren? (dneck one) () Yes Ifyes,nunberofchildren ( ) NO Haveyonhadanymiscarriages? (Checkone) ( ) Yes If yes, how many _ ( ) Nb Race (Check one). ( ) White ( ) American Indian ( ) Black ( ) HiSPanic ( ) other (please Specify)_ Age (write in) Education (Circle highest level conpleted) : 1 2 3 4 5 6 7 8- 9 10 11 12 13 14 15 16 17 18 19 20 (Granmnar School) (High School) (College) (Graduate School) Marital Status (Check one) ()Single ()ihrried ()Separated ()Divorced ()Widowed TotalFamilyIncone (Checkone): ( ) Less than $9,999 ( ) $20,000 to $24,999 ( ) $10,000 to $14,999 ( ) $25,000 to $49,999 ( ) $15,000 to $19,999 ( ) $50,000 or more In what state do yon currently reside? (Write in) Doyonhavehalthinsurance? () Yes () No Ifyos,doesyonrhealthirsuranceccveryonrDESexans?()Yes ()No APPENDIX F ApprovalletterfronUCRIHs 351? UCE pro inv The fut MICHIGAN STATE UNIVERSITY UNIVIISTY COMMITTEE ON RESEARCH INVOLVING - EAST LANSING 0 MICHIGAN 0 (8824-1046 HUIAN SUBJECTS (UCRIHS) 23. ADKINISTIATION BUILDING (517) 355-11“ November 19, 1986 Ms. Louise A. Pointkowski ‘ 2811 - let Street Wyandotte, Michigan 48192 Dear Ms. Pointkowski: Subject: Proposal Entitled, "Extent to Which Female Offspring Exposed to Diethylstilbestrol (DES) in Utero Receive DES Task Force Recommended Health Care" I am pleased to advise that I concur with your evaluation that this project is exempt from full UCRIHS review, and approval is herewith granted for conduct of the project. ' You are reminded that UCRIHS approval is valid for one calendar year. If you plan to continue this project beyond one year, please make provisions for obtaining appropriate UCRIHS approval prior to November 19, 1987. Any changes in procedures involving human subjects must be reviewed by the UCRIHS prior to initiation of the change. UCRIHS must also be notified .promptly of any problems (unexpected side effects, complaints, etc.) involvingflhuman subjects during the course of the work. Thank you for bringing this‘project to my attention. If I can be of any future help, please do not hesitate to let me know.,- ' Sincerely, He ry E. Bredeck, Ph.D. Chairman, UCRIHS HEB/jms cc: Dr. Barbara Given MS U is an Affirmative Action/Equal Opportunity Institution APPENDIX G RelevantSubqnstimsbyGron APPENDIX G RelevantSubolestimsbyGrolp APPENDIX G RelevantSubcpestiosbyGroup 'I‘oarswertheoverallreseardaquestion: mmmmmmmmmmmm BYTIIEFHIRALGJVMT’S‘ESKFOKIE? Relevant estions of dLu" : 1 W: 4, 5a, 6a mithelial changes: 4, 5b, 6b gived care (for all E m): 2, 3, 5c, 7 Relevant Wions m 1 1. Wonen who learned of exposure 2 during puberty who did not have 3 abnormal Pap Smear or epithelial 5c changes. .7 1 2. Wcmen who learned of exposure 2 during puberty who had an 3 abnormal Pap Smear but _n_c_>_1;. 4 epithelial changes. 5a Sc 6a 7 1 3. Wouen who learned of 2 during puberty who Mot have 3 an abnormal Pap smear but did 4 have epithelial changes. 5b 5C 6b 7 “888%d*“”“ Wonen who learned of exposure during puberty who had an abnormal Pap Smear and epithelial changes. 153 154 Relevant 3 Corresponding Criteria m 5. Wonenwholearnedofexposure afterwbertywhodidnot haveanabnomal PapSmearor MEL-ingress- 6. Wonenwholearnedofexposure afterpubertywhodidhavean abnormalPapSmearbutdidnot haveepithelialchanges. 7. Wonen who learned of exposure after puberty who did not have an abnormal Pap Smear but did have epithelial changes . 8. Wonenwholearnedofexposure afterpuber‘tywhohadan abnormalPapSnearand epithelialchanges. APPENDIX H Contents of “-Exposed mughters mQuestiormaire APPENDIX H Garments of S-Exposed Daughters on Questionnaire "niarflcyoiforthisstudy. ‘Ihis ‘disease' anditssynpto'tswill bewithusforever. Wewilloveroonethisgybyknowingwhatto lockortfor. Ardthankstopemlelilaeyoifornaldmusaware throaghreseardr!" "'IheGovermIent shouldbemadetosubsidizethese exans." "manksforthis. Anyresearchwillalwayshelpus. After seeing DES ‘specialists’ for 13 years, I’ve finally fomd one who is great. Ihave, inthepast, beentheoietobringoirrentDE‘Sinfoto mysooalled specialists!" I nust admit that my amreciation for the value of gynecologic testingonayearlybasiswaswell instilledinmeatayomgage becauseofmymexposure. Wensomanyofmyma-exposed‘ friendsfailtoseetheinportarneofroltinedxeclmpsmlessthey have a GYN problan or issue oonoerningbirth control or infertility. Wevmenneedtowiseupardgetmtopofoirpersonalhealthl!" "...My‘enaosurehasbroightus7yearsofheartache, expense, surgeries, and grief." 155 156 "merearenoquestimshereaborttheawtioialinpactofDES exposure. Ipmbablywillneverbeabletohavediildren. Ihavethe costantthreatofcanoerhangingovermyhead. Myreproductive systenhasbeentanperedwithandlhavenowaytodealwithitother thantalijgaboititwithotherxvictins. Ihavehadsevereamtimalproblensthroigtmtmylife. Imust dealwiththefactthathillalwayshavetotakemedicationbecnuse ofthealtereddiemistryinmybrain. (Itakemthimnarrisinequan). DidtheIESexpooirecausethis? I quend my life consumed by rage at the insersitive male M.D.'s anddrugooupanies. Iwillcnrrythispaihwithmetmtiltheendof mydays. Pleaseincludethisinyoiranvey. Becauseafterallthe painfulexansandlasersargeriesandfearsaboxtbiopsyresultslam stillleftwithmyanger. 'IheonlybrightspotinallthisisthatmylmsbandandIareon fliemitinglistforababygirlfronxorea. Krmingthathill beooneamotherinznonthseasessoneofthispain. Goodluckwith yoiruaster’sthesis!" "Ihavehadtohaveaompletehysterectouyarfloophorectouydue tosevereadenosis. ...‘BieproblasthaveenoomteredduetoDEB expoomehavealnostoolpletelydestroyedmyhealthandwell being. It is painful to even think of all the prdalans." 157 —- ‘Infantile’ reproductivesysten --Diffio11tygettirgpregnant —-3miscarriaqes—alllsttrimester -—Oervicalinoolpetenoe(o1rrentoerclageputonatl9weeks for l-l/2 cm dilation in 2nd drild) -—Nospo1tarieoislaboroilstdelivery(irrmoedwithoervical tearingapoordilaticn) —Abnormalplaoentaladiesio'nswithhanonhage&marmalranoval -—-Bleedingin13tard21fltrimesterseomdarytolovplaoenta durimwrrérrtpregramy -—-Mydaughterhasnovagimlq3eningarriwillhavesurgery. (I didnottake‘). Otherinplicatioxsunkrmnat this time." "DietonlyDESexpooJre,Imriementatotalabdmdml hysterectouyin1981. MymsbardardIhavemchildrenardithur‘ts meverymichlcmimthathillneverbeabletooonoeive." "...MontookDESformybmtherarrlsistertoo. Brotherhasa lowspermoomtbutdoeshaveZchildren. Sisterhashadoonebiopsy for carcixma-in-situ. She appears to be 0.x. for now. An unexposed sisteralsohadaoonebiopsybecauseofabnomalpapsmearaam unsure of the specific problem). ...Myoornernisformydaughter. Hopefullytherearenolong termproblemspassedoitoher. 'Ihank yo: for yo1r shady." 157 "—‘Infantile' reprodactivesystan —-Diffio11tygettirgpregnant --3miscarriages-alllsttrimester -—Oervicalihoorpetaioe(o1rrartoerclagepatmatl9weeks for l-l/2 cm dilatim in 2rd child) —-Nospo1taneozslabormlstdelivery(induoedwithoervical tearingsxpoordilatim) —-Atmorna1plaoentalacmesioiswithhamrrhage&mm1alremoval -—Bleedinginlstarri2rdtrinesterseooflarytolowplaoenta durimamrtpregnamy -—-Mydaughterhasmvaginalopminganiwillhavemrgery. (I didnottake‘). Otherinplicatiorstmknownatthis time. " "nietomyflexposure,1mdemltatotalabdoniml hysterectouyin1981. MymsbardaniIhavemdiildrenarflithurts meverymichlomingthatlwillneverbeabletoomoeive." "...Montookmformybrotheranisistertoo. Brotherhasa lovspermoomtbutdoeshaveZdiildren. Sisterhashadoonebiopsy for carcinota-in-simi. Sheappears tobe0.K. for mw. Anunexposed sisteralsohadaoonebiopsybecauseofabnormalPapsmearaam unsure of the specific problem). ...Myoonoernisformydaughter. Hopefullytherearenolong termproblemspassedontoher. 'Ihank yo: for yoir shady." 158 "...Also, itwoxldbegreattohavea‘hotline forthose timesvmenyolvmld‘lovetotalktosoreoeabortyoirfears, concerns, anxieties, etc." "Partofthereasmiiyformynotgoingforspecializedms “anymreisthatlfeltlflceareseardiproject, andwith anywherefronl-3or4doctorsgatheredaro1rri, itreallyseemed mimeventhnghmyemnsareallbenignahaveanatonicaldnnges ‘Sflood'fl. MImsyomgerIfeltlikeIwasmakingan inportantoontributim, nowthat I'minmychild—bearing years, I find flieseexansextrenelymiervirg." '"Iheobjectionlhavetomytreatnentistheextenttowhichmy presentDr.goestoprotecttherestofthemedimloomunityatthe expense of gaming the problem." "My biggest problem is the fact that it has literally taken more than7yearstofind adequate (‘ informed) medical attenticm. This beganfronwhenIfirstfomdortthatIms‘exposedinlWG. BeforethattineIhadSDscsaniaoonethathasleftmewithan inompetentoervix. Tobehoest,Ihavebeenbutcheredquitebadly inthisarea. EveninacityaslargeasAtlanta,therearenotan ahnrianoeofmedicalpractitionerswhoareoonoeniedorinforned aboItIDESpatients." 'Myhealthcnreduringmymismssful pregnancieswas less satisfactory than my oJrrent health care. ‘Ihey didn't link the 159 repeatedmiscarriagestolISmrtilafterthethirdone,eventhoighmy exposure was verified. " "...InthepastIhavehadverym—informedproviders. Onetold nelhadcanoer:tookbiopsies:hadnereturninoeweektotellneI didn'thaveitafter'all. I-Iehadneveremmineda‘daughter before! Otherswereasbad..." "... I’ve been throgh screening at a county health facility where I received poor info." "I was told that sinoemyoolposoopywas fine (6 years ago) that allIneednowisyearlyPaptests. BIt,ho1estlyI’mmtsurethe MD's reallyknowwhat proper protocol is! Orthatastandardexists." "I feel OB/GYN's shouldbeprovided with updated guidelines re: careof‘exposedwonen—toonanthaveseenhavemtbeen sensitive to my concerns." "I have been going for regular enamimtions every six months since 1978. I am satisfied with my health care provider in terms of camerchecks. Intermoftheqiestioisofotherareas,suchas fertility (Iamsingle), generalinfectionsandhowthey relatetoDES daughters, andotherareas, I amnotsatisfied. I donot faultmy healthcareprovider, ratherthe lack of researhdone. More studies needtobedoneinotherareas." 160 "Mynnnalwaysknavwhatdngshewastakingwhilecarryingne. Infactshestorpedtakirgitbecauseitwasmakinghersicklmther cbctorsmredherenoughsoshetookitagain." "Severalyearsago,afteraClassII+Papardsubsequent bqusies,Iwasadvisedtohavecryosurgeryoftheoervix. Aseoond minim at U. C. Medical Canter — ahorrible, horrible experience as ‘Sreseardimaterial',bytheway—omfirmedthisreoomendation. Irefusedarddidmtfollovthisreoometflation. Twoyearslater, it wasfon'dthat‘dauglrtersdom’thealproperlyaftercryosurgery— that the procedure often causes mre problem than it solves. 'miswasthelaststrawinmyoigoingseriesofquitehorrid experienceswiththemedical establishments. Istillhaveaperpetual ClassII+orIIIPap,butIhavemintentimofreoeiving ‘treatnents'tooontiniemyroleasaguineapigJ' "Because I’vemoved sooften for jobs andschool, andoftento analltoms, Ihaverothadoontiruosoarefronoedoctor. This causes overreactions by doctors unfamiliar with my history (despite fintos) - theytendtowanttobiopsy. Also, I've fomd it very diffioflttofindegdoctors (asopposedtormrses) -most arm't willing to disolss my cancer-rs & fears (e.g., ‘don’t worry abo1tmiscarriagesuntilyo1wanttogetpregnant’)." "... Ivmldansweranotimal questionstoo (fearsaboutcanoer, miscarriage):hasDESmademefearml ofhavingchildren? _YE§! Afraid of cancer? Y_E_§!" 161 "Ifeelthathealthcareprovidersslmldbenorealertto effects,otherthancanoer,of‘e)qaoane&sho11dlettheir patientslmovotherpatentialrisks. ImlyfomdortthatIhavea anedutemsaftermymiscarriage,&wasstillunawareofhigher riskofmbalpregnamies—mrtilafterlhadoeardbegandoingmy ownresearch/reading. Ihadfeltsafebewusemydoctorsaidtherisk ofmydevelopirgcamermsprettynxhover. Maybethereneedstobe more plblicity in general..." "I am glad this research infeutim is being collected. I feel likethenorebackgromdinformatioithatoanbeaoomulatedthe better we can treat the omplicatios." ". . . Forgive my cynician, but despite all the attenticm given to a fetus by ‘pro-life’ groups, ani all the attention given to infertility and surrogates, etc., no owe can tell me why I can't have afull-termsiooessfulpregnancy! Ican'tbetheonlyonewiththis problem Why is therenoreseardltohelp pirpoint why I miscarry?!" "In1984mymtherhadaradicalmastectony. ShewastakingDES duringmypregnamyileSB. ShenayhavetakenitileSOwithmy brother's also. PIediedileBOfronIaflcania." Wminkitvmldbeveryinterestingforsoneonetodoastudyon thearotimal effectsof‘exposure. WillingtobettheDFS exposed have significantly higher levels of assertiveness, etc. 161 "Ifeelthathealthmreprovidersslmldbemrealertto effects,otherthancanoer,of‘expoa1re&sho11dlettheir patientslgmotherpotentialrisks. Io'llyfomiortthatlhavea Hupeduterusaftermymiscarriage,&wasstillimawareofhigher riskofmbalpregnancies—mtilafterlhadoreandbegandoingmy ownreseardi/reading. Ihadfeltsafebecausemydoctorsaidtherisk ofmydevelopirgcamermsprettyMwer. Daybethereneedstobe mre publicity in general...” "I am glad this research informatim is being collected. I feel liJcethemorebackgronri informtimthatcanbeaoonmlatedthe better we can treat the omplicatio'ls." ".. . Forgive my cynicisn, but despite all the attention given to a fetus by ‘pro-life' groips, and all the attention given to infertility and surrogates, etc, no one can tell me why I can’t have afull-termsuooessful pregnancy! Ican’tbetheonlyonewiththis prtblan. Why is theremresearchtohelp pirpoint why I miscarry?!" "In1984mynotherhadaradioalmstectony. ShewastakingDFS duringmypregnancyileSB. Shemayhavetakenitin1950withmy brother's also. Hediedin1980fron1a1kania." '"Ihinkitwouldbeveryinterestingforsoneonetodoastudyon ttxearotional effectsof‘exposure. WillirgtobettheDES exposed have significantly higher levels of assertiveness, etc. 162 ‘marflcstothiseiqaerienoe. memaminjuredinyolr‘femaleness’ sotospeak, itgoesdeep.” "...MyOB/GYNdidmtmiitorneashighriskanddidmtseem tobeooxoernedaboitwhattheinfertilitydoctorsaid. InOctober 1984, Idelivereda 2 lb. 8 oz. infant withsevererespiratory problans aloig with the other omplicatiois of prematurity and a five withhospitalstay. Heisalsodiagnosedashavingsevereoerebral palsy. Ihavesirnebeenveryoiucatedoims. IfIvmldhaveknom tlmalltheinformatioillowmvoi‘daughters,lwoildhave beenmonitoredasahighriskpatiort. Ihaveseenmoother infertility specialists since then. 'Ihey reoonnend getting pregnant andbeingtreatedhighrisk. I, ofooirse,amrealpuzzledastowhat route totake (no more childroi, pregnancy, adcption, or surrogate mther)..." "Medical reoordspirdiasedfrmhoqaital aftermanyrare unexplained problems." "Iwantedtoaddsoneoonnentstoyoirquestiomaireperhapsto clarifymyanswers. MynotherwasgiventhedrugStilbestrolinJmeof1950. Iwas borninlateMarchof 1951. Iwasexposedataveryearlystage. Aboxtthethirdweek,asfaraswecantell. ‘Ihedrugwasoontinued untilIwasborn. Iwasbornwithaurethralstricmrearriitwasalsomisplaoed. IhadtohavetmdilatioisaweeJ-rmrtilIfinallyhadsurgeryyears 163 later. Ihavereadwherethisisfomdinsomexposedmales. My mtherdevelcpedbreastumrsarddiedfrmbreastcarner. Myperiodsreverlastedovermodaysandwereverylightforthe extentofmymenstruallife. FinallyattheageonéIwentthrogh pralatmrenenopausewhidihasoflymvbeendiagnosed. Iwastold thatitwasprobablyanxietyforseveralyears. Ihavenorthada periodsinoeIwasZGyearsold. Almsttenyearsago. Myperiods didstopforoeyearvdrenImZOardagainatZLbuttheymfld return lightly miss}, did end. Mybabies allhadbirth defects. Mydaughterwhodid survive, a miracle, isalmst 14 yearsold. Shehadtwomajor surgeries forher birthdefects. Sheisrmhavirgmnstrualprdalutoo. Hershave stqped,asminedid. Geneticwork-upshavebeenaiggestedtousto seeifIbecameacarrierofbirthdefectsbecauseofDESandperhaps mydatglrterwillbetoo. Ifsheisabletohavediildren. Atthis pointveareoilybeginnirqthetestim. Inmycityanistate,adeq.1atehealthcareformsisextrately hard to find. Physicians are hesitant abort having us for patients becauseofanypossiblelegalprooeedingsasaresultofDES. Informatim ofanynatureregardirg‘ isalmostinpossibleto find. Ihadtosearchmyself,themysiciamofferedmemadvise whatsoever. Iwasreallyshocked. 'IhecznoerSocietyinmycitydid mtevenhaveanyinfornationoiIISorlo'mwhatitwas. Andthisis thecapitalofthestate. mt,Ihavefomdo1tthatIdohavemanleSproblats. Ihave theextrenelyanalluterus. Ishowsignsof‘oitheoervix. Iam goingtohaveaoolposoopyarflbiopsyoir'ebruaryzoth. 'IheHSdee testisbeingoonsidered. Iaminfertileandwasmostofmylife 164 accordingtomyGYN..‘Ihebabieswereamysteryasfarastheycan tell. Myreproductivetractfmctionedsoverylittlemostofthe tine. art‘screeningisreallyinpossibletofindinthisstate. 'Ihishasbeenaloigandaveryhardstnggle. Andtheendisnot hereyet." "ShoruyafterIlostmysecorldaughtermornprematureat7 lordshIheardabort“. Ireadthatitcoildcausereproductive ahnrmalities,&I]gfltherehadtobeareasoillostmybabiessc lateinpregnancy. Ialscknavmymonhadhadlotsofproblemstrying togetpregnantsxthatshe’dbledofffioi,earlyinherpregnancy withme. Iknewthey'dgivenher‘several things', butshecorldn't ranarberwhatanycfitwas. Bythistime,IwasZ4yearsold. Mymon'sdoctorhadlcngsinoe diedtxmynedicalrecordsweredestroyed. IwantedchildremIneeded answers. ENerytimeIsawanavdoctorI’daskabortm,hrtgot mmere. FimllyafterZyears,anAustraliandoctoro1anexdiange programwiththemilitaryinfiawaiiexamiredne&exclained,‘misis a‘daughter!’tomyOB-GYN&begantoexplaintohimaboxtthe 1hysicald1angesheoo11dseebecauseof‘—oockscorboervix,etc. Iinsistedtheydofurthertests,becausewewereinanAm1yMedioal Center. Iforghtthebattle foranswersfcr years. Icoildn't accept theirtellirgnethat‘wasmthingtoworryabort! Imlolgeraskquestionss:acceptanswer's. Ifindmyown arswersthruDESActioiarrimedical jolrnals. WithortDESActioi,wevictian11dhavemthing. Aslongas we’re living withthepain& stress Snuncertainties resultant of that drug,thestoryisnotm. 165 I'mdcingeverythingloantoeomteothersabortDES, &warncf thepoasibilityofanothersimilaroconaiceinthefirtureifwedm't Little by little, we'll eventually reach on goal. 'IhankGod for [IS Action. REFERENCES Listof References Amriean Cancer Society. (1985) . 125; gamer Facts and Figur_gs_. New York, NY: American carver Society. Ansel, z., Grover, P. L., & Balshan, A. M. (1984). lbs inpact of physician reinforcement or breast self-examinatiol practice. WW. 12(2): 235'233- Ardersol, 3., Watring, w. G., Edinger, D. 3., Small, E. c., Netland, A. T., & Safaii, H. (1979). Developnent of IFS-associated clear-cell carcinona: The importance of regular mim- WWW. 2(3). 293-299. Arm, D. J., Christensen, D. 6., m, S. A., 0rd, L., & Wells, S. R. (1978). Inplonenting Or'on’s colceptual framework. Journal of WW9}. §(11). 8-11- Barnes, A. 3., colton, 'r., cinnamon, J., Noller, K. L., Tilley, 3. c., Strama, T., W, D. 3., Hatab, P., & O’Brien, p. c. (1980). Fertilityarrioltcoleofpregnancy inwonenexposed in utero to diethylstilbestrol. 113 & ggland Journal of Medicine, 392(11), 609-613. Bibbo, 14., Gill, w. 3., Azizi, F., Blmgn, R., Fang, v. s., Rosenfield, R. L., Sdnmacher, G. F. 3., Sleeper, K., Sonek, M. e., & Wied, G. L. (1977) . Follow-up study of role and female offspring of DES-exposed matters. M of Obstetrics and W. 52(1), 1-8. 166 167 Brackbold, 2., & Bererfles, a. w. (1978). Dangers of diethylstilbestrol: Reviov of a 1953 paper. gm 2, 520. (110i, M. W. (1985) . Preamble to a new paradigm for women's health care. WW. 2(1): 14-16. “Act—1m National- (1983)- W Wm. New Hyde Park. NY- Actiol USA, Inc. (Samar 1986). E3 Aggig; Voice: A focus m WW. Issue 29. San Francisco. OA- Ac'tiol USA, Inc. (Winter 1987). M199 Voice: A focus—on WW. Issue 31. San 5131191500. CA- Diedmann, W. J., Davis, M. E., Rynkiovicz, L. M., & Pottinger, R. E. (1953) . Does the aduinistratior of diethylstilbestrol during Dream-“Icy have therapeutic value- W W. §§(5). 1062-1031- Emster, V. L. (1984) . Risk factors for benign and malignant breast disease- In E- 13- Gold (Ed-1. MIME—63.52111 WWW (PP- 135’193)- my MA: 'Ihe Collanore Press. Ferolso), J. H. (1953). Effect of stilbestrol o1 pregnancy cotpared t0 the effect of a Placeboo Wm m, §§(3), 592-601. Fitzpatrick, J ., & Vhall, A. (1983). m models of nursmg’ . MD: Robert Brady Colpany. Fuller, A. F. (1978). 'Ihe syndrone and clear cell adenocarcinona in me wetnen- massing. 1(3). 201-205. 168 Goroll, A. 3., May, L. A., & Mulley, A. G. (1981). ELM. care m. Philadelphia: J. B. Limireott Conpany. W, L. 3., s. Hayes, J. 3. (1985). W mutations: Fifth edition. Nov York: Amleton-Century—Crofts. Greereerg, E. R., Barnes, A. 8., Msseguie, L., Barrett, J. A., Burnside, S., Ianza, L. L., Neff, R. R., Stevens, M., Young, R. R., 8 Colton, T. (1984). Breast career in nethers given diethylstilbestrcl in pregnancy. fine M gylarnd Journal of m, _3_]_.1(22), 1393-1398). Harm, A. C. (1983, Karon). di lstilbestrcl Mim- Bethesda, II): National Career Institute/Office of career Conmmicatioe. Han-u. A. C- (1985. July)- Wm WW. Betmsda. MD: National Career Institute/Office of Career Cmmlnicaticns. Herbst, A. L. (3a.); (1934). Diethylstilbestrol exposure - 1934. W. 111(22): 1433-1434- Herhst, A. L., Ulfelder, H., 8 Positanzer, D. C. (1971). Adenecarcinona cf the vagina: Association of maternal stilbestrol tlerapywithtmnorarpearanoeinyolngwonen. fingNergland mm. 235(15): 373-331- 169 Holmes, H. B., Hoskins, B. 8., 8 Gross, M. (£21.). (1981). _‘It_n_e_ Clifton, NJ: Jonmstm, G. A. (1983) . Health risks and effeccts of prenatal acct-me to diethylstilbesml- Wages mm, 51-54. Iaffrey, S. C. (1985) . Health behavior deice as related to self-actualization and health coeqation. W W. 1(3): 279'300- Manun, J. A., & Zapka, J. G. (1985). Inproving frequency and proficiency of breast self-oomination: Effectiveness of an eomtion P10913133 WM. 1.5.(5). 618-624. Mrton, L. (1978) . Self-care mrsirg model for patients experiencing radical dame in body ime- WWI—0915: WW: 1(5): 9'13- lhyers, R. (1983). W. New York: Seaview/Pnrtnam. Michielutte, R., Diseker, R. A., Young, L. 0., & May, w. J. (1985). Noempliaree in screening follow-up among family planning clinic Patients With Gen/ial GYBPlasia- mm. 15(2) , 248-258. National Cancer Institute/Office of Career Connunications, Update. 170 Needle, R. (1976) . Patterns of utilization of health services by college wonen. 25(5), 307-312. O'Brien, 3. c., Noller, K. L., nohboy, S. J., Barnes, A. 3., Kaufman, R. H., Tilley, 3. c., & 'Ibwnsond, D. 3. (1979). Vaginal epithelial changes inyomgwonenenrolled inthenational coperative Diethylstilbestrol Adoesis (IISAD) project. WHEY. 53(3). 300-308- O'Malley, M. S., Fletcher, S. w., & anee, L. A. (1985). physicians and the teaching of breast self-examination: Inplications fron a survey at a 1miversity teaching Iespital. American Journal of mic Health, 15(6), 673-675. 0m, D. E- (1985). W (3rd editim)- Nov York: )eGraw-Hill Book Ompany. Craters. C- L- (1981). W- New York: St. thrtin's Press. Orr, J. w., Shingleto'n, H. 11., Gore, H., Austin, J. 14., Batch, K. 3., & Soong, S. J. (1981). Cervical intraepithelial neoplasia associated with expoolre‘to diethylstilbestrol in utero: A clinical and patlwlogic sufly- MW. 2(1). 75-82. Petravage, J. 3., Reynolds, L. J., Gardner, H. J., and Reading, J. c. (1979) . Attitudes of wonen toward the gynecologic examination. WW. 2(5): 1039-1045- Pclit, D. F., & Hungler, 3. P. (1983). W W. (2nd edition). Philadelphia: J. B. Lippincott Gummy- I 171 Rice, D. P., Hire, E., Kcvar, M. G., S: Prager, K. (1984). In E. 8. Gold (3a.), m (pp. 1-24). Lexington, MA: The Collamore Press. Rdnbay, S. J., Friedlarder, L. M., Welch, W. R., Keh, P. C., Taft, P. D., Barnes, A. B., Scully, R. E., & Herbst, A. L. (1976). cytology of 5‘75yonevmnenwithprenatal exposureto diEflIYIStj-WI- W: 9.85). 511-515. Rohhoy, s. J., Kaufinan, R. H., Prat, J., Welch, w. R., Gaffey, T., Scully, R. 3., Richart, R., Fenoglio, c. M., virata, R., s. Tilley, B. C. (1979). Patlelogic firdires in yolre women enrolled in the national cooperative Diethylstilbestrol Aderesis (DESAD) project- W. 53(3). 309-317- Roteoy, S. J., Noller, K. L. O’Brien, P., Kauflnan, R. M., ‘I’omserd, D., Barnes, A. E., Gundersen, J., Lawreree, W. D., Bergstrahl, E., Mchrray, S., Tilley, B. C., Anton, J., & anazen, G. (1984). Increased incideree of cervical and vaginal dysplasia in 3,980 diethylstilbestrcl-exposed yore women. Jolrnal .u, 252(21), 2979-2983. may, 8. J., Szyfelbein, w. M., Goellner, J. R., Kaufman, R. H., Taft, P. D., Richard, R. M., Gaffey, '1'. A. Prat, J., Virata, R., natah, p. A., MoGorray, s. P., Noller. K. L., Townsend, D., Labarthe, D., S: Barnes, A. B. (1981). Dysplasia ard cytologic firdires in 4,589 yomg womn enrolled in Diethylstilbestrol-Adoesis (m3) project. Micah Jml of WW: 159(5): 579-585- 172 Smith, 0. W., & Snith, G. V. (1949). 'Ihe influenee of diethylstilbestrol on the progress ard ortoone of pregnancy as based on a conparison of treated with untreated primigravidas. WM: 3(5): 994-1009- Somers, s. c., Iawley, 'r. 3., s. Hertig, A. T. (1949). A study of the placenta in pregnancy treated by stilbestrol. mican Jolrnal WWW: §§(5): 1010-1013- Stillman, R. J. (1982). In utero exposure to diethylstilbestrol: Adverse effects on the reproductive tract ard reproductive performance in mle ard fonale offsprire. American Journal of W: 192(7): 905.921- U.S. Bureau of the Canon. (1986). 339$ lg, abstract of the W (107th edition). Was-1mm. DC- U.S. anartment of Health and marten Services. (Novanber 1983) . WM]. (NIH Publication No. 84-2344) . Washington, DC: U.S. Government Printing Office. U.S. Department of Health ard amen Services: Rnblic Health Services, National Institute of Health. (1985) . m of the 1985 D_FS ta__s_k 3%. National Career Institute. U.S. Department of Health and imam Services. (August 1986) . m1: m: What yon should know (NIH Publication No. 86-2000). Washington, DC: U.S. Governmrt Printire Office. Woods, N. F. (1985) . Self-care practices among yomg adult married wonen. WW. §(3): 227'233-