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I... 7.7 .70... 70.0.7007... 70.7777... 7.0.777 .. . .1200. 3.02.00.77 7.771;...7. 7. . . . 7 7.77. 7. .....77777., ..00..........77.....7 7 . 7|. .. 70.10.77.730. 0022.77.77.07. .. ..770707... . . 09:9§.A I .0 0. 7057‘ 7 7.. ......‘.O. 070...... 0... 7. 7 . .. . .... .790...7.I0... 77.02.20}? 7.002”. .7 .. . 7 :7 7 “.0179QQ... 4.7000700... 07’ .’r\.7mMMMmMMMma Olhe's live in the household Mufiwmmwmew Has depressive symptoms Hasasupportnetwa'kob 3people andP %ofSam la 58 8288 28888133383 28 31 24/30 16127 Receives more emotional support than the mean SA T IGN IS Slagel Stage" Slagelll SlagelV (08$: 14 13 Kev. S . I I' 'll Psydlologicalvafidzle Badebhealmcataaooess 'Fmatotalsamleoffiuiessoflewiseindcated 36 Table 2. Research esfion 1: The Most F ue Occurn'n hic Barriers Health Access Barriers %ofSam$ p: Z §Q m W anandentfortrmsportation 18 6 Noprimarycsreplwsician 9 3 leaslnaruraloounty 94 32 TravelsmorettenZSrriles ' torredmcale 6I30 Ema/ll Noirewmoe,Medcae, and/orMedcaid 6 2 EEB§ONAL Non-caucasianellwcily 3 1 Lesstlmalighscmoledmfim 15 5 ”tried 6? 23 Pwerly-Ievelhwseholdimome 30 9/30 Ofllersllvelntllehousahold 82 28 Aga35hum54yaasold 44 15 TotalSociodmngmlicBarries , 3.82 1.15 2-6 TolalBanie's 4.62 1.52 2-8 Ker Barrierpresentlormorethansmcolsubjecb ‘Fromasarmleofflmlessotherwiseindcated 37 (SD 1.15) . Barriers to health care access were identified for every subject in the study. The barriers with the highest frequencies and that affected more than half of the sample were rurality (94% and a structural barrier), living with others in the household (82% and a personal barrier), and being married (67% and a personal barrier). The high frequency of rurality is not unexpected, since the Rural Cancer Care Study collects data from four rural counties. It is also not unexpected that a subject who is married would have others living in the household, particularly a spouse. The percentage of women who are married (67%) is slightly lower than the national average (73%) (US Bureau of the Census, 1994); however, given the small sample size, this may not be a variance of significance. Research mestion Two The second question asked how the number of access barriers for women with stage I and II breast cancer compared to those of wunen with stage III and Iv breast cancer. This information is provided in Table 3. When combined, the women with stage I and II breast cancers had fewer sociodemographic and psychological barriers (mean of 4.59; SD 1.57, range 2-8) than the grouping ccmlposed of wanen with stage III and Iv disease (mean of 4.71; SD 1.28, range 3-7). When both barrier configurations (structural, financial and personal; sociodemographic and psychological) are compared by chi-square, the differences between the means were not significant at the 95% confidence level with 3 degrees of freedom. Tab .R u ' n2: ’sonofN mberofBam‘ersto Heafl! Cg Agms of $1an I and 11 versus Stage III and N Ix I 18 E S_tagg at Diagnosis 3 l & ll 27 4.59 1.57 2 - 8 III & IV 7 4.71 1.28 3 7 38 Research gestion Three The third question addressed the relationship between the number of access barriers and stage of cancer at diagnosis. Table 4 contains data by barrier type (structural, financial, and personal, as well as psychological and sociodemgraphic) . A Pearson correlation revealed no statistical difference in the relationship diagnosis (r=.0293, p=.869). Since there was only one subject diagnosed at the stage III, statistics for that stage (mean, standard deviation) were not meaningful . In summary, the stage with the highest number of total barriers was IV (mean of 4.83, SD 1.35, range 3-7), followed by I then II. Stage IV subjects had the highest mean for structural barriers (followed by Stage I then Stage II) and psychological barriers (followed by Stage II then Stage I). Stage I subjects accrued the highest mean for sociodemographic barriers (followed by Stage II then Stage IV), and Stage II had the highest mean for personal barriers (followed by Stage IV then Stage I). Additionally, it was noted in Table 3 that women with advanced stage breast cancer had more barriers (mean of 4.71, SD 1.28, range 3-7) than did women with early stage disease (mean of 4.59, SD 1.57, range 2-8). Despite the absence of statistical significance, there may be clinical significance in the pattern for total barriers , structural barriers, and psychological barriers to be highest at Stage IV, and for the presence of the inverse relationship between stage and sociodemographic barriers . 39 Table 4. Research Question 3: man fl mg Num of Barriers to Health gm Am by M gt Digmg's Stage I Stage II Stage III Stage IV ____Barriors _n=_1_4. E12 1151 E; STRUCTU Dependent for transportation 4 1 0 1 No primary care physician 0 1 0 2 lives in a rural county 14 11 1 6 Travels > 25 miles for health care 3 2 0 1 W 21 15 1 10 Mean 1.5 1.15 1 1.67 same Deviation 0.5 .62 - 0.75 nge 1 - 2 0 - 3 - 1 - 3 Fl lAL No inwanoe, Medcere, Medeald 1 1 0 0 EEBM Non-caucasian ethricity 1 0 0 0 Less than a ligh school edrcation 3 1 0 1 Married 10 10 1 2 Poverty-level household income 5 3 0 1 Others live in the household 11 12 1 4 Age 35 to 54 years old 5 6 1 3 Has depressive symptoms 5 7 0 3 Support network of < 3 people 0 0 0 1 Receives limited emotional support 3 4 0 4 W 43 43 3 19 Mean 3.07 3.31 3 3.17 Stardard Deviation 1.48 .98 - 1.14 Range 1 - 6 2 - 5 - 1 - 4 __IALT0 -AiflA&B|.E_R_S 6‘5 59 4 29 Mean 4.64 4.54 4 4.83 Starda‘d Deviation 1.54 1.60 - 1.35 Range 2 - 8 2 - 8 - 3 - 7 PfimHOLQML - Total Barriers 8 11 0 8 Mean .57 .85 0 1.33 Standard Deviation .68 .56 - .55 Range 0 - 2 0 - 2 — 1 - 2 flIODEMOGRAPfilQ - Total Barriers W 48 4 21 Mean 4.07 3.69 4 3.5 Standard Deviation 1.16 1.2 - .96 Range 2-6 2-6 - 2-5 40 Research ggestion Four The fourth question in this study asked about the relationship between access barriers and level of depressive symptomatology, based on the CBS-D score. Table 5 depicts the total number of barriers and the CBS- D scores that were 16 or more, which are considered barrier-level. The Pearson correlation for this relationship showed no statistical significance (rs-.0780, p=.661). However, there was a significant finding between two personal barriers : CBS-D score and the perceived level of emotional support. A moderate, negative relationship (rs-.6864, p-.000) was noted with Pearson correlation. This finding infers that as the perceived level of emotional support decreased, depressive symptoms rose. Thirty of the subjects completed the CBS-D scale, scoring in a range from 2 to 39. The mean score for all subjects was 16.67 (SD 10.26), which falls within the range for depressive symptomatology. However, the mean score for the 15 subjects with CBS-D scores of 16 or more was 25 (SD 7.46). There was a relationship between CBS-D score and the number of barriers; as the number of barriers rose, the frequency of CBS-D scores above 16 rose. Research meetion Five The fifth question addressed the relationship between the stage at diagnosis and level of depressive symptomatology (CBS-D score), also shown in Table 5 . There was no statistically significant correlation of CBS-D score with stage (r=.1707, p=.335). of the 30 subjects who took the CBS-D instrument, 12 (40%) were stage I; 13 were stage II (43%); 1 was Stage III (3%); and 4 were Stage IV (13%). Based on these occurrences, a similar distribution might be expected to occur in those with CBS-D scores above 15. The results did not bear this out, however; Stages II and IV were over-represented (47% and 20% respectively), while Stages I and III 41 were under-represented (33% and 0% respectively). It is also noteworthy that of the four subjects who did not take the CBS-D instrument, 2 had Stage III disease and 2 had Stage IV. 42 Tab 5. Research u ‘ns4 nd5: ari of Di nosi N ofBaniersto Health CareAm, gndCEs-DScore>1§ MB $292 _____NumberofBaniors CBS-080m a 3 g game 2 2 12 2 10-14 23 2 3 so 3 6 10 11.6 2-30 13 1 4 20 31 2 4 24 33 2 4 23 4 7 14.7 7 7-24 30 1 5 39 8 2 5 1s 32 2 5 16 17 4 5 20 5 10 14.8 9.5 3-39 6 1 6 19 27 4 6 17 6 2 18 1 17-19 16 1 7 38 2 2 7 22 25 4 7 so 7 3 30 6.53 22-38 20 r 8 —36 11 2 8 23 8 2 29.5 6.52 23-36 ioldiace=banier46velscore nd=nodata 43 Interpretation of the Findings It is important to first acknowledge the limiting effect the small sample size had on the characteristics and on meaningful analysis of the data. The very small number of women in the study with advanced stage breast cancer also hindered the analysis of this group. although there were no findings of statistical significance in this study, a repetition of this study with a larger sample may well yield statistically or clinically important results . The larger issue of health care access for rural women deserves continued exploration, particularly considering the near-absence of such studies in the literature. Within the study model, personal barriers occurred most frequently, followed by structural then financial barriers. This may have been explained by the size of these categories; they were the largest, with personal containing 9 of the 14 study variables and structural containing 4 . The high frequencies for the rurality (structural), living with others (personal), and marital status (personal) also pushed these barrier categories forward. Although most of these barriers were well documented in the literature, it is unclear from this study if these specific barriers have other particular significance in this population. Examination of other barriers was hindered by low frequencies; for example, with only one noncaucasian in the study, no relative conclusions could be drawn. The first research question proposed that an index of sociodemographic barriers to health care access could be constructed from the most frequently-occurring sociodemographic barriers . Rurality, living with others, and being married were the only barriers that affected at least 50% of the sample; however, these three barriers would provide few cues for identification of clients who may have substantial health care access barriers. An index which also included psychological barriers would 44 be more likely to more meaningfully capture barrier status . The increase in depressive symptoms with number of barriers was one of the more interesting study findings, and one with clear implications for the advanced practice nurse . However, the third psychological barrier (less than 3 people in each woman ' s emotional support network, as reported in the literature) was not strongly supported in this study. The primary variable in the structural barriers was rurality. Dependence for transportation and traveling for health care were poorly supported. One-third of the women with stage IV disease (2 of 6) reported not having a primary care physician. Since this information was gathered after the diagnosis of cancer, it is unknown if they did not have a primary care physician, or if they switched their primary care to oncologists and other physicians since being diagnosed. Although of small scope in this study, it would be worthy of future study in other breast cancer populations . Since most of the subjects had some type of insurance, the financial variable did not hear much useful information. Since the barrier was constructed in such narrow terms (presence or absence of insurance, Medicare, or Medicaid) , only those with no coverage whatsoever were captured. No data was collected about the type of therapy each women was receiving, based on her insurance status . Although complete absence of coverage is an important factor in accessing health care, the presence of insurance, Medicare, or Medicaid does not assure freedom from barriers. A more comprehensive focus on coverage may have yielded more illuminating data. One of the controversial positions in this study was consideration of marriage as a barrier to health care access for rural women. Although the majority of the women in the study were married, this study did not 45 firmly establish whether marriage served as barrier to the women or was simply a demographic commonality among them. As previously reported, researchers take stands on both sides of this issue, but little scientific study has been directed specifically toward rural women. There are anecdotal reports of rural husbands who refused to call a physician for their ailing wives , but who stationed a veterinarian immediately for a sniffle in their prized bull. Without bigger, direct studies of rural women's access, the issue remains unclear. The findings regarding relationship between the number of access barriers and stage of cancer at diagnosis (third research question) were not as complete as possible since data for some of the subjects was missing. The small sample size and limited number of subjects with advanced disease made it difficult to draw meaningful conclusions regarding barrier substantiation, parallels with published literature, or consistency with the study model. The study model and definition of health care access were used with moderate success . Useful comparisons were gained from examination of both the psychological] sociodemographic barrier grouping and the structural] financial/personal grouping. The study model was found to be effective in identifying some barriers to access in a rural sanple, and in identifying trends that may be worthy of further examination in a larger study. With respect to the study definition of health care access, the study and model addressed affordability (insurance and income), acccmmodation (distance to care , transportation, educational level), acceptability (congruence with rural values, ethnicity), and attainability and availability (presence of a primary care physician). The personal issues of depression and emotional support certainly may impact attainability, but many other factors may have a more direct effect. Notwithstanding, this definition of health care access was useful and worked well with the study model. DISCUSSION Discussion, Assggptions, and Limitations The small sample size and limitations it imposed on the study have already been discussed. The results of this study are not generalizable to any other population. It is hoped, however that as the Rural Cancer Care Study continues and additional subjects are added to the population, there ‘will be ongoing opportunities for analysis of barriers to access. The US Bureau of the Census poverty level used for this study was $14,335. Due to the data assignment to a category by range, there may have been inaccurately assigned data. All members of the $10,000-$14,999 household income range were considered to have an income equal to or less than poverty level, although there may have been subjects whose incomes were above $14,335 but less than $14,999. Thus, it is possible that the actual number of subjects with household incomes of $14,335 or less new overattributed. It is assumed that the subjects were capable of responding, and that they did so in an honest, accurate manner. It is certainly possible, however, that information that could not be readily substantiated in the medical record (such as whether one was truly a high school graduate or had a particular level of income) was incorrect. It is further assumed that certain factors can act as barriers to health care access, and that the barriers make a difference in one's health outcomes. A related caveat is that interaction with the health care system and visits to a primary care provider (or utilization, the center portion of the 1024 model) lead to positive health outcomes . However, it is possible that this study's subjects' failure to achieve the best possible outcome was related to other factors outside the scope of this study, such 46 47 as error in diagnosis or physician delay in treatment initiation. Although the subjects reported having a primary care physician to whom they had made visits in the last 3 months, it is possible that they did not have a primary care physician before they were diagnosed or had failed to routinely visit their primary care provider . The original proposal anticipated that the study data would be collected within 3 months of each subject's initial diagnosis of cancer. One of the limitations of this study was that only 9 of the subjects were initially interviewed less than 3 months after diagnosis, and 2 had carpleted the self-administered instrument containing the CBS-D by then. As such, the personal and structural factors and levels of depression measured may have related to the phase of learning to cope with their cancer diagnosis (or, in some cases, recurrence) rather than being an indicator of ongoing barriers or a depressive state that may have kept them away from or ineffective within the health care system. The CBS-D instrument classically inquires about subjective affective status ”in the last week" . The directions to the subjects in this study asked that they respond about their feelings "within the past month“ . It is not known if any of the instrument's psychometrics are altered with this difference in timeframe. Elications for Existing Literature This study had no statistically significant findings to add to the existing literature but did note some patterns that were consistent with those previously reported in the literature . The more important contribution that this study may make, however, is to create a greater awareness of the barriers to health care access for a segment of our society who are nearly invisible - rural mu - at a time when health care reform is underway . 48 Further refinement of the health care access barrier index should also occur. Although the study's original proposal was to develop an index based upon the sociodemographic barriers, it is clear from this work that psychological barriers play a key role as well and must also be included in the index. The study model may be a useful tool for further barrier analysis, as well as for clinical practice. The health care provider who is oblivious to or uninformed about barriers that clients may be experiencing will be at a great disadvantage in helping clients to identify, reduce, manage, or eliminate them. The model serves as a quick reminder that barriers come in many forms, and have serious consequences . others must be encouraged to continue the exploration, identification, analysis , management, eradication, and reporting of findings regarding barriers to health care access. Elications for Advggced Nursing Practice and Prim care This study presents additional cues to the advanced practice nurse to identify and evaluate barriers to health care access that his / her rural female clients may be experiencing . Although study barriers were not determined to be predictive in this study, the presence of several barriers for any woman in the rural primary care setting is deserving of assessment and management or elimination . This study highlighted the importance of identifying psychological barriers. Half of the women in this study perceived that they received limited emotional support, and reports of affective distress rose with the number of barriers . Additional emotional support can come from having or developing a confident , strengthening the family support network (burying old grudges, re-establishing contact, making time for building better family relationships), better understanding, strengthening, or repairing 49 the marriage dyad (eliminating as much negativity, dysfunction, and stress in the relationship as possible; understanding that the marriage relationship may influence the way in which a woman responds to menopause; encouraging her efforts to establish her own identity as a wman in addition to that of a wife), involvement in shared-interest groups (church, crafts, social organizations, volunteer work), support groups (spousal abuse, cancer survivors), or acquisition of a pet. The client may benefit from improving her stress management skills, changing her coping style, or increasing her physical exercise . There must be ongoing efforts to actively reduce the barriers in anticipation that depressive symptoms will diminish as well . The advanced practice nurse can assess the levels and sources of support each woman feels she has in her life. The advanced practice nurse can make regular evaluations of the waman's depressive symptms using the CBS-D scale or other instruments, performing a thorough clinical assessment, referring for assessment, or initiating or referring for treatment. The client' s level of depressive symptoms may simply require ongoing monitoring and assuring that the woman feels free to discuss her concerns , or more aggressive treatment . The holistic advanced practice nurse recognizes the importance of emotional support to the client ' s emotional health, and works to identify support sources in the mm s family circle, home, and carnunity. S/he must also educate the client about the intertwining of support and depression, help her to identify symptoms in herself and, when necessary, encourage her to seek treatment. Clinically, the advanced practice nurse will use the roles of educator, advocate, clinician, assessor, counselor, researcher, and change agent to address structural, financial, and personal barriers . For example, some women in this study had high levels of depressive symptoms or 50 very low levels of emotional support . The advanced practice nurse who holistically views the client and family and who makes the time to listen to clients can better interpret the meaning of these findings to the client's life. Strategies can then be planned and implemented to minimize, manage, or eliminate them to the extent possible. Barriers such as ethnicity, age, or gender are ”fixed“; that is, they would be impossible to change. However, the advanced practice nurse can help women to identify and educate them about their barriers and risks. Some barriers may be more amenable to change. A woman without transportation may infrequently receive care at a clinic 40 miles from her home because she is unaware of a closer site. The advanced practice nurse can assist the patient in selecting an alternate care source; check with the county transit system or other carrier to learn the routes, cost, days and times of operation, and method of access; and provide ccmplete transition of medical records and care information to the new care manager and facility, including the barriers to health care access that have already been identified. other barriers may be identified through history-taking or ongoing information-gathering . Determinations regarding who is living with the client, how many others she has caregiving responsibilities for, and her assessment of her relationships can occur in the course of any office visit and provides valuable information about actual or potential barriers . modifying these barriers may involve more personal or financial resources than the woman may have, or she might not be interested in making any changes at this time. The advanced practice nurse should assess these issues with the woman at risk, educate her, provide her with information about community resources that she :may be unaware of, and convey a willingness to discuss or assist the woman in making changes not as a part 51 of one office visit but as a function of her ongoing care. There is little the advanced practice nurse can do to alter the woman's income status. However, a low-income client may be able to pay less for health care services if assisted by the advanced practice nurse to apply for special programs , or educated about participation in sliding scales or other fee defrayment methods . The advanced practice nurse should be familiar with other resources in the community and, when referrals are necessary, refer to other health care providers who will accept the client's financial or insurance status. The advanced practice nurse can gather information about the impact of underinsurance or uninsurance on the lives and health of his/ her clients and advocate for change within his/her clinic, county, state, and nation; Based on current trends, it is likely that 150,000 women will be diagnosed with breast cancer this year. Considering the survival rate for those with early stage breast cancer is five times better than that for late stage cancer, strategies for self-examination and practitioner screening and early detection in the primary care setting are extremely important. One of the goals for women's health in this nation should be elimination of the finding of advanced stage breast cancer upon initial diagnosis. We can only achieve that goal if we identify and aggressively work to reduce or eliminate the barriers for women to health care access. One method with relevance to this study would be for the advanced practice nurse to teach every female client about breast health, self breast examination, disease risk factors, and the importance of reporting abnormalities quickly. Another tactic is to diligently follow established protocols for health maintenance and cancer screening for every female client in the advanced practice nurse ' 3 practice. Access barrier management can be a tool for empowerment of the rural 52 woman. In working with the woman to identify her real or potential barriers , the advanced practice nurse can help her develop strategies for minimizing or eliminating these barriers whenever possible . The advanced practice nurse is the optimal provider within the health care system to be a client advocate in the identification and management of barriers to access. As an assessor, s/he develops a data base for each person, including sociodemographic and psychological factors . As a clinician, s/he optimizes every interaction each woman has with the health care system, educates her regarding her health management and wellness, and does not lose sight of the woman's advocacy needs and assessment as she develops a management plan with - not for - the man. S/he educates other members of the health care team who may not see or understand the barriers to access that are present for this and other women . This study offers support for the advanced practice nurse ' s practice paradigm; that is , remain sensitive to who your patient is, treat her respectfully, and meet her at her presenting level of coping and capability. Explore with her how her culture, role in her family, or ethnicity may shape her views, treatment options, and wellness . Access includes meeting the woman' s individual threshold for acceptability, attainability, accommodation, affordability, and availability; if her threshold is not met, not only her health but that of her family may suffer, since women are often responsible for arranging and assuring receipt of health care services for other family members. Thus, a system that shuns female participation or access is likely to negatively impact the health of not only the woman, but all those for whom she has a caregiver role . As new health care systems are developed under national health care reform, the advanced practice nurse ' s unique knowledge, 53 perspective, and abilities as a change agent are ideal for designing a system that identifies and eliminates access barriers. The advanced practice nurse is ideally suited for leading continued research regarding barriers to health care access . Mgmtions for Further Research virtually any aspect of health care access barriers is amenable to discovery, and it is critical to continue further analysis with larger samples. Any one of the 14 health care access barriers in the study is worthy of research. Careful documentation of the factors in a rural woman ' s life, perhaps through personal, focused interviews, that kept her frat seeking health care or that made her impotent within the system must be systematically documented, evaluated, and ultimately eliminated or reduced. Based on the results of this study, it would be useful to conduct more detailed analysis of the relationships among perceived emtional support, living arrangements , and level of depressive symptoms . Longitudinal studies of rural women, their health care, and barriers - especially any psychological indicators - would be invaluable . Another component fran this study that would be useful to examine in larger samples is the pre—diagnosis presence or absence of a primary care physician for women with advanced stage breast cancer. It would be interesting to repeat this study using a larger sample of rural wanen. It would be even more compelling to concurrently gather data from rural areas throughout the state, and compare health care access barriers of the groups . There are few research dollars aimed at women, much less rural women with access problems, although they make up a significant portion of the population of every state; this de-emphasis of female research must stop . No doubt there is more known about the laundry detergent buying 54 habits of rural women than about their health care knowledge and access barriers . Little has been scientifically documented about rural Michigan women, how they may compare to their urban sisters, and the health promotion and wellness practices of each. Michigan Department of Public Health has a wealth of data about Michigan women, but there has been little scientific inquiry about their health risks or even if residency in one rural county (1 .e . , where there is no hospital or other health care source that has made a serious comitment to not just staying in business but in actively improving the health of the community) may put women more at risk than another. This invites further research. A final suggestion is that the study's definition of health care access, the study°s model, or the three elements of the 1014 barriers to access model (financial, structural, and personal) and utilization mediators be systematically evaluated, perhaps through the study of preventable diseases and illnesses. This information would help in refining, supporting, or completely revamping the definition and the models, lending additional fundamental knowledge about access and barriers to future researchers, and assisting us as a nation to recognize and minimize factors that discourage Americans from accessing the health care system, promoting wellness, and preventing disease. The advanced practice nurse is ideally and uniquely prepared to design, lead, and participate in research activities, generating new knowledge and improving the practice of all levels of health care providers . APPENDICES APPENDIX A Telephone Instrument 55 APPENDIX A Telephone Instrument CANCER IV RURAL CANCER CARE STUDY HAVE I.PATIENT TELEPHONE TELEPHONE PACKET (PATIENT) 'Rurai Partnership Linkage for Cancer Care" Grant #1 R01 CA56338 Funded by the National Cancer Institute 56 CURRENT FEELINGS These questions ask about how you feel, and how things have been with you mm m. For each question, read the statement then circle the one answer that cases closest to the way you have been feeling during the past month. Do not spend too such tine on any one statement. EXAHPLE ”IDS HEW, III! are OF THE TIHE have you eaten breakfast? (CIRCLE ONE) ALMST ALL MST OF SME OF RARELY OR “E OF THE TIHE THE TIME THE TIME OF THE TIHE MIKTHEM, HWIEHOFTHETIHE ... l. were you bothered by things that usually don't bother you? (circle one) ' ALIIJST ALL _ MST OF SCIIE OF RARELY OR WE OF THE TIHE THE TIHE ~ THE TIME OF THE TIHE 2. have you not felt like eating; had a poor appetite? (circle one) AUDST ALL ’ HIST OF SUE OF RARELY OR NOTE OF THE TIME THE TIHE THE TIHE OF THE TIHE 3. have you felt that you could not shake off the bl ues, even with the help of faeily or friends? (circle one) MST ALL IOST 0F SIDE OF RARELY (I! ME ,OF THE TIHE THE THE THE TIHE OF THE TIHE 4. have you felt that you were Just as good as other people? (circle one) ALMOST ALL nosr or sun: or mu on non: OF THE TIHE ' THE TIHE THE THE OF THE TIHE .5. have you had trouble keeping your wind on what you were doing? (circle one) ALMST ALL TDST OF SITE OF RARELY 0R NINE OF THE TIME THE TIHE THE TIHE OF THE TIHE 5'7 warns THE w, now men or me me IO. .11. 12. I3. 14. 15. have you felt depressed? (circle one) ALMST ALL IIJST OF SUE 0F RARELY OR NONE OF THE TIME THE TIHE THE TIHE OF THE TIHE have you felt that everything you did was an effort? (circle one) ALMST ALL IDST OF SUE OF RARELY OR NONE OF THE TIHE THE TIHE THE THE OF THE TIHE have you felt hopeful about the future? (circle one) ALIDSTALL IDSTOF' SMEOF RARELYORIBNE OF THE TIME THE TIHE THE TIHE OF THE TINE have you thought your life has been a failure? (circle one) ALMST ALL MST OF SUE OF RARELY OR NONE OF THE TIHE THE TIHE THE TIHE OF THE TIHE have you felt fearful? (circle one) ALMSTALL ' IIISTOF sensor RARELYORIOIE OF THE TIIE THE TIHE THE TIHE OF THE TIHE has your sleep been restless? (circle one) ALIDST ALL HIST 0F SUE OF RARELY OR THE OF THE TIHE THE TIHE THE TINE OF THE TIHE have you felt happy? (circle one) ALIDST ALL IDST OF SUE OF RARELY OR INDIE OF THE TIIIE THE TIHE TIE TIIIE OF THE TIIIE have you talked less than usual? (circle one) ALMST ALL IDST OF SUE OF RARELY OR INDIE OF THE TIHE TIIE TIIE THE TIIIE OF THE TIHE have you felt lonely? (circle one) ALIDST ALL IIIST OF SUE OF RARELY OR INHIE OF THE TIHE THE TIIE THE THE OF THE TIIE have you felt people were unfriendly? (circle one) ALMSTALL MSTOF SMEOF RARELYORIDHE OF THE TIHE THE TIHE THE TIHE OF THE TIHE 58 DURING THE £A§I_52!Ifl, HON HUCH OF THE TIHE ... 16. 17. 18. 19. 20. have you enjoyed life? (circle one) ALMST ALL MST OF SUIE OF RARELY OR “E OF THE TIHE THE TIME THE TIME OF THE TIME have you had crying spells? (circle one) ALIDST ALL IDST OF SUE OF RARELY OR NINE OF THE TIME THE TIHE THE TIHE OF THE THE have you felt sad? (circle one) ALMST ALL IDST OF SGIE OF . RARELY OR INDIE OF THE TIME THE TIHE THE TIHE OF THE TIHE have you felt that people disliked you? (circle one) ALIIJST ALL IIIST OF SUE OF RARELY OR NME OF THE TIME THE TIHE THE TIHE OF THE TIME could you not get 'going?‘ (circle one) ALMST ALL IDST OF SUE OF RARELY OR THE OF THE TIHE THE TIHE THE TIHE OF THETIIE Please circle one response for each item that represents how m about each stateeent. 21. 22. 24. In uncertain tines, I usually expect the best. (circle one) STRMGLY AGREE AGREE OISAGREE STRUIGLY OISAGREE If soeething can go wrong for me, it will. (circle one) 51mm AGREE AGREE OISAGREE 51mm OISAGREE I always look on the bright side of things. (circle one) STRONGLY AGREE AGREE DISAGREE STRUISLY OISAEREE I'n always optimistic about my future. (circle one) STRGBLY AGREE AGREE OISAGREE STRMGLY OISAGREE APPENDIX B Self-Administered Instrument 59 APPENDIX B Self-Administered Instrument CARERIV MALCAIEERCAIESTIIIY Have! The answers you give to these questions are very inortant in helping us to better understand the experiences dealing with cancer. You should try to eark the response . which is lost like your own feelings and experiences. Your answers will be of great help to us and we want to remind you that the answers you give are strictly confidential. If you have questions, please call Cindy Espinosa or Charles H. Given at (517) 353-0306 or toll free at 1-800—654-8219. He appreciate the tine that you spend answering these questions and we value the answers you give. Your help is the nest inortant factor in our efforts to learn more about patients dealing with cancer. Please comlete and return this booklet in the self-addressed stewed envelope by ' . Thank you. SELF-AMINISTEREO [MET (PATIENT) 'Rural Partnership Linkage for Cancer Care' Grant # 1 R01 CA56338 Funded by the National Cancer Institute CA IV Screening IO __ __ __/INT ___ 60 Date ... :7... _./_ ._ SCREENING CANCER PATIENT NAHE AND ADDRESS Name of Patient: Address of Patient: Telephone: ( ) Name and phone number of contact person if unable to reach patient: Relation to patient: Telephone: ( ) Location: CA IV Have I Patient Telephone IO __ __ __/INT ___ 61 Date __ ;:Z__ __/__ __ Prior to interviewb- Enter date (month, day and year) and interviewer number on each page, if indicated. SOCIOOEHOGRAPHIC INFORNATION FOR CANCER PATIENT 1. Sex of patient: (check one) Hale (1) Female (2) 2. Hhat is your birthdate? (write in) /___/._. HSnEfi/Tbay [YEar 3. Nhat is your highest level of education completed? (check one) No formal education (1) Completed grade school (2) Completed some high school (3) Completed high school (4) Completed some college or technical training (5) Completed college (6) Completed graduate/professional degree (post baccalaureate degree) (7) NA/Refused (9) 4. Hhat is your race or ethnic background? (check one) Caucasian/Hhite (1) African American/Black (2) Mexican American/Hispanic/Chicano (3) Native American/Alaskan (4) Oriental/Asian/Pacific Islander (5) Other (6) (specify ) NA/Refused' (9) 5. Hhat is your marital status? (check one) Never married (1) Married (2) Divorced/Separated (3) Hidowed (4) NA/Refused (9) (GO TO NEXT PAGE) CA IV Have I Patient Telephone IO __ __ __/INT ___ 62 Date __ _:7__.__/__.__ 6. In which county do you live? (check one) Allegan (1) Barry (2) _Berrien (3) —Branch (4) _Calhoun (5) _Cass (6) :Eaton (7) _Ionia (8) Kalamazoo (9) —Kent (10) _Ottawa (11) St. Joseph (12) ‘ _Other (specify ) (13) :NA/Refused (99) ' 7. Hhen was the month and year you moved to this county? (write in) / REFER/Year Now we are going to ask you questions about who lives with you, and about persons who might help you. 8. Hho lives in your household with you? (check all that apply) a) _No one—- lives alone (1) b) :Spouse (2) c) :Your children or step-children (3) If c was checked, then: (c3A) How many children under 13 years of age? _____(write in number) (c3B) How many 13 to 17 years of age? _____ (write in number) (c3C) How many 18 years or older? _ (write in number) d) ___ Any other children under 18 years of age (4) If d was checked, then: (d4A) How many children under 13 years of age? _(write in nwer) (d4B) How many 13 to 17 years of age? _ (write in nmer) (GO TO NEXT PAGE) CA IV Have 1 Patient Telephone 63 IO DatET;::;:[:T;_/__T:: FAHILY NETHORK 11. Now I would like you to think about all your living relatives; parents, brothers, sisters, children, step-children, nieces, or nephews. He would like to know how much they support you emotionally, and how much they help with physical care, help around the house or with shopping or transportation. both. emotionally and with physical care. bit, some, a little, or very little to none. The same relative may help with one or Please tell me the relationship of the relative to you, how far they live from you (if they live in your home, let me know), and then how much they help you You can say that they help a great deal, quite a (Interviewer: I REFER/Year For all of the following questions, if patient was diagnosed in the past three months, then preface questions that follow'with: 'Since your diagnosis ....' ago, then preface questions that follow with: I'In the past three months ...') If diagno NA/Refused (9) sis was (Interviewer: Ask patient for first relative, initials, and relationship to patient. Proceed with all relatives patient reports.) INITIALS RELATIONSHIP TO DISTANCE IN HON HUCH EMOTIONAL HON HUCH PHYSICAL PATIENT HILES SUPPORT DOES THIS HELP DOES THIS PERSON PROVIDE PERSON PROVIDE 1 - Lives in my TO YOU? TO YOU? household 2 - Less than 1 - None or very 1 - None or very 10 miles little little 3 - Between 10 2 - A little 2 - A little 3 50 miles 3 - Some 3 - Some 4 - More than 4 - Quite a bit 4 - Quite a bit 50 miles 5 - A great deal 5 - A great deal 1 2 3 4 l 2 3 4 5 1 2 3 4 5 1 2 3 4 - I 2 3 4 5 1 2 3 4 5 1 2 3 4 1 2 3 4 5 1 Z 3 4 5 I 2 3 4 I 2 3 4 5 1 2 3 4 5 I 2 3 4 1 2 3 4 5 1 2 3 4 5 1 2 3 4 1 2 3 4 5 I 2 3 4 5 1 2 3 4 1 2 3 4 5 1 2 3 4 S 1 2 3 4 1 2 3 4 5 1 2 3 4 5 1 2 3 4 1 2 3 4 5 1 2 3 4 5 I 2 3 4 1 2 3 4 5 1 2 3 4 5 12. Please tell me the month and year you were diagnosed with your cancer. (write in) three months CA IV Have 1 Patient Telephone ID [INT 54 Data—_ _/:_/_ _ 7) TRANSPORTATION 7a. 7b. 7c. 7d. 7e. Three months ago, with regard to getting to places outside of walking distance, i.e., going to the doctor’s or grocery shopping away from your neighborhood ... (check one) Did you drive yourself? (1) Did someone drive you (i.e., taxi, e-train, relative, or friend)? (2) Others have always driven me. (3) NA/Refused (9) Currently, with regard to getting places outside of walking distance, i.e., going to the doctor’s or grocery shopping away from your neighborhood ... Do you drive yourself? (Go to question 8) (1) Does someone drive you (i.e., taxi, e-train, relative, or friend)? (Go to To) (2) Others have always driven me. (Go to 7:) (3) NA/Refused (9) Is this due to your ... (check one) Cancer or cancer treatment (Go to 7d) (1) Other health problem(s) (Go to 7d) (2) NA/Refused (9) If someone helps you with transportation ... (check all that apply) primary caregiver (1) (Go to 7e) unpaid family (5) (Go to 7f) paid family (2) (Go to 7g) unpaid friends/others (6) (Go to 7f) paid friends/others (3) (Go to 79) unpaid professional (7) (Go to 7f) paid professional (4) (Co to 7g) NA/Refused (9) If the primary caregiver helps with transportation ... (I) In the past week, how many times did he/she help with transportation? (write in) Times per week (2) Approximately how long in minutes each time did he/she help with transportation? (write in) Hinutes each time (Interviewer: If patient doesn’t know, then ask them to estimate as best they can.) (Go TD NEXT PAGE) . 30 CA IV Have I Patient Telephone ID __ __ [INT 55 Date _ _/_ __/__ _ 3d. Oh how many of these visits did someone go with you? (write in) ___ Times someone went with patient 4. In the past three months or since you were first diagnosed with cancer, have you visited a laboratory for tests? (check one) Yes (Co to 4a) (1) : No (Go to 5) (2) ___ NA/Refused (9) 4a. Please list the city in which the laboratory was located: (write in) City: 4b. Excluding time for other stops, from the time you left home until you returned home, how long did a typical visit take? (write in) _ Hours 4c. In the last three months or since you were first diagnosed with cancer, how many times have you visited this laboratory? (write in) ____Times 4d. On how many of these visits did someone go with you? (write in) ___ Times someone went with patient 5. In the past three months or since you were first diagnosed with cancer, have you visited a primary care physician? (check one) Yes (Go to 5a) (1) : No (Go to a) (2) _ NA/Refused (9) 5a. Please list the name and city in which the primary care physician was located: (write in) City: 5b. Excluding time for other stops, from the time you left home until you returned home, how long did a typical visit take? (write in) ___ Hours_ 45 ‘0 CA IV Have 1 Patient Telephone 66 Considering all these sources of income, what was the combined household income of all hogsehold members in 1993? (Please indicate gross income, before deducting taxes.) (c eck one) In 6a. 6b 6c 6d Do Household Income Categories: 0 - 5,000 - 10,000 - 15,000 20,000 25,000 30,000 4,999 (1) ___35,ooo - 39,999 (a) 9,999 (2) ___4o,ooo - 44,999 (9) 14,999 (3) ___45,000 - 49,999 (10) 19,999 (4) ___so,ooo - 59,999 (11) 24,999 (5) ___60,000 - 69,999 (12) 29,999 (6) ___7o,ooo - 79,999 (13) 34,999 (7) ___ao,ooo - 89,999 (14) 90,000 and over (15) (Go to question 6) 1993, did you receive ... Food stamps? (check one) ___ Yes (60 to 6b) (1) ___ No (Go to 6d) (2) ___ NA/Refused (9) . How much in food stamps per month? (write in) (Go to 6c) . For how many months did you receive food stamps? (write in) Nonths . Hinter heat assistance? (check one) Yes (1) — No (2) : NA/Refused (9) you currently have health insurance? (check one) Yes (Co to 7a) (1) : No (Go to question 17) (2) ___ NA/Refused (9) (GO TO NEXT PAGE) 101 APPENDIX C University Committee on Research Involving Human Subjects Approval of the Rural Cancer Care study 67 APPENDIX C University Committee on Research Involving Human Subjects Approval of the Rural Cancer Care study MICHIGAN STATE LIEV I \I E II S I 1' Y larch 14 , 1996 so than Ci ‘ ll 0 31.1113? Center ll: Ellis 91-217 TIM: moan. PM 1.1m to cancer can mates W: I a m' 5‘". 7:“ arm DAR: 3/ 6 5 The universit onnaaaarch Invol manna sun acts' OCRIIII review hiE 3.31s” complete an 51" MI ( the ) sadto r htsandwsiars cftha subsets appearttohaadaquat “acted andmsthodst Gowns, consent “Wm. «gore, the We approved this project including anyrev ion ”I an approval“ is .valid for one calendar :ngtP beginning with alda hcwnabove. Invosti lann nningtto 1 form (“133% with EX: original t:gpe'ovall. “letter or when a meta: w)“ nomads certification. There is such ampadit renewals sihls. Inve storm wishi beyond the timsnasd to tit againngorm capleta ““me ash:ects,°¥siot mtolinItiation“ we? tachanga res “mg?” is gas at grarvk.1.;a"m. an ' Enema“ mrm" time during. the year send 'I'tan request$ uths 3m was Chair reguu ting revised a1 and referenc cingths project's all! i and itia. Include t a dose potion":o of c anrsvy revised rumsnt consent forms or advarti sthat are applicable. cums: should either of the follow arise possum?“ the course a: the work; tors must notiiys1)gro31- (unexpected a do altsctshints,invo1v| omen sun acts or changes Lathe researchc anvircensnt I: new in! rmation icatinge greater risk to the human sub (acts than existed when the protoc was previously MM ami approved If we can be a! any rfigure he}; please do not hesitate to contact as at (517)355-21so orM(817) I- 17:. 8mm Hemmer San LBW 225 Annmhttion mm as Lansing, me amt-1046 DlIspjm 517735-2131: FAX; 511435-171 Aw 340M. new awn)" APPENDIX D Subject Consent Form 68 APPENDIX D ' Subject Consent Form normal scars oarvsum Rural Cancer Care Project the project in which we are asking you to participate is designed to learn noreehoutthodoliveryotenursorocusodnotworhct tsuppcrtivecanoercars directed to tanilioe residing in the rural col-unity. Patients receiving cancer care in the rural area will he interviewed hya seats: or the Rural Cancer Cere Project research start. the interviews will take approxinately es-so ninutes to couplets (e tines per year). Patients will also he eshed to ccnplete a short written questionnaire (4 tires per year) and have their radical records reviewed. 1: you are willing to participate. please read and sign the rollcwing state-ant: l. IhavarroelyconsentodtotahepartinaprojoctotCencsrCareto Patients and their raeily flashers conducted by the liohigan State University Colleges or nursing and Runen ledicino. Departnant o: raeily Practice, Cancer Center or llichigan State university, the Kalanaooo Clinical Oncology Progrens and the relenaroo Center or hodical studies. 2. ‘rheprojocthssheendoscrihedandonlainodtonoandlunderstandmt ey participation will involve. , . 3. I understand that participating in this project is voluntary. e. I understand that I can withdraw tron participating at any tins without penal orany adverssispactonthecere towhichleaothorwise entitlzd by calling l-soo-sse-azis. s. I understand that prorassionels (physicians and nursoa)who provide care toaoowillnothavoacossstoayreapmestophmintarviswsor questionnaires. 6. Innderstandthatnoi-ediatohonotitswillresultetrcmtakingpartin enaworirqthoguoationneire.hutleeewerethetay rospcnseseeyeddts the understanding or health care proteooionals.’ or the orperiucs ct cancarareineruralaroaendneyinrluoncstuturotanilycare. 7. Iundoratandthatthocere providodasapartctthenuralCencerCare Networhwillhs hsaocordingtoeplanoroencarcarodstareinodhyay physician"). Denotits in coordination and availability or care is s. I understand that the nurse providing care will work in collaboration with ny physician(s) and keep ny physician“) interned o: ey progress to ensure cocrdinatedoare s. I understand that ey troatnsnt plan and appropriate radical infarction tr: sy radical record will he shared with rotor-rel services (i.e., skilled home care agencies. hospices) it a referral is node. 69 lo. :mundersta‘mndfiat the results of the project will be treated in strict ay none will reaein anonyncus tron reports or ' publications. I understand that within these restricticn'slla,y results can, upon request, he ends available to so. 11. I request that by nodiéal records be node available to Dr. Charles I. Given, Processor, reeily Practice, hichigan State University. 12. I understand that a senbor or the project start say wish to inquire about ay group health insurance policy hsnerits to understand what honotits are available to no and cosparo those to what I an presently using. I authorise the health Care Financing ministration to release inzcraaticn about self. to the storerentioned parties tor the purposes or the research pro act. entitled 'hural Partnership Linkage tor Cancer Care.’ in which I an a participant. rho intonation to he released will include adniaeions to hospitals, nursing bones, and other health care tacilitiea. the respective length or stay tor these adnissicns and all health care costs paid by nodicaro including physician services. .this consent is ortectivo until such ties that I withdraw ny authorisation. rorsorsinroraationconoerningtheresoarchandruearch-relatedrishor inggiw :23, contact Dr. Charles W. Given. the investigator in charge at ( . ' . In addition. 1 can contact Dr. Donald batts at (sis) Jae-us: it 1 have any question regarding patient's rights in research studies. l.theundersigned.etatethstlundsrstandwhatisroquiredcresisa participantandagreototahapartin this project. . Signed Date ’loase print nane Last nano Wrens IT". . Address Date of birth Social security lower health Insurance Claia luster him.“ s/n/se APPENDIX E University Connnittee on Research Involving Human Subjects Approval of this Study 70 .arrunnxnx E University Committee on Research Involving Hunan subjects Approval of. this Study MICHIGAN STATE UNIVERSITY IIsrchZD.1995 1'0: finthia Ntcher 1 530 forest Drive Charlevoir Iii. 49120 RI: use: 95-15. mm ”www.mmm ' men: “a grant III AID xv m m m: m: cnrsoosr: l-l m cars: 03/20/95 The University Co-itteo onleemch Involving “snub ects' (scares) review of this project is ”complete. I e- ploased to adv “that the rights and welfare or the human subjects appear to be adequatel pgotectod and methods to obtain inter-d more anemia 11:35 above UCR ‘ . j 1 is m: was approval“ is valid for one calendar year. beginning with, the approvalde shown above. Investigators planning to continue. eu use the renewal tore (onclo’maod ,withmrigina’lu letter-gorillas a prom os renewed) to seeh‘sdaw certiticatice. there is a t tour such orpedi oible. Invest wish to continue a mject beyond the ties need to m again or complete rev . asvxsrass UCIIIS must review manages “mm involving” subjects. °prior to tiaticn otm change. I! this is does at the ties renewal. please ueetho raswelrcn. to rovieeana protocolat tiesar theyear send to “5am w your Chair inlI ‘1 "t. deecr ion orjthe.:hange'and it}: "I I: a ‘ request t 1 pt or gay 1.. racer. m8, amid eithgf c! at: tollmXarisedur 1 : subjectscr szde effects comp aints. ”Meg: I y lving ”mam intoreeticn Mmicating greater rish to the hush sub“ acts ”than eri was previously reviewed . Itwecanheotanytuturoholg “amusitatetocontactne or (51113 to 171. Map)- cc: Iarhara 'h. Given swan-21a) ' FAX SIT/@4171 7»wa Molasses-m ”can“. @13va LIST OF REFERENCES LIST 0!" REFERENCES Aday, L., 8 Anderson, R. (1974). A framework for the study of access to medical care. Health finicgg Resgarch, 9, 208-220. Anderson, G. H. (1993). Health care and the rural poor. m 169, 16-18. Hassott, I... W., e Hendrick, R. H. (1994). Quality dotm’ ts 2f mm. Rockville, MD: Us Department of Health and Human Services, Public Health Service, Agency for Health care Policy and Research. Hieliauskas, L. A. (1984). Depression, stress, and cancer. In c. L. COOper, (Ed. ) , Psychosocial Stress and Cancer. New York: John Wiley 8 Sons. Cancer and the at task force. (n.d.). American Cancer Society, Michigan Division Inc . Hrnster, V. L., Sacks, S. 'l'., Selvin, S., a Petrakis, N. L. (1979). Cancer incidence by marital status : Third national cancer survey . Journal of the National Cancer Institute 63, 567-585. Pox, C. 11., Harper, P., Hyner, G. C., & Lyle, R. H. (1994). Loneliness, emotional repression, marital quality, and major life events in women who develop breast cancer. Journal of Commity Health, 19, 467-482. Friedman, E. (1994). Money isn't everything Nonfinancial barriers to access. JAMA, 271, 1535-1538. Given, 3. A., Given, c. w., a Harlan, A. N. (1994). Strategies to meet the needs of the rural poor. Swims in gggglm Nursim, 1 , 114- 122. Goodwin, J. 8., Hunt, w. C., Key, C. R., a samet, J. H. (1987). The effect of marital status on stage, treatment, and survival of cancer patients. JAMA, 258, 3125-3130. Harrington, C., Peetham, S. I.., Hoccia, P. A., and Smith, G. R. (1993) . Health care access Problg and mlig recmpgti gns, working paper. Washington, DC: American Academy of Nursing. Hartley, 0., Quam, L., :- Lurie, N. (1994). Urban and rural differences in health insurance and access to care. The Journal of gel Health, 10, 98-108. Holleb, A. 1., Pink, D. J., 8 Murphy, G. P. (1991). Breast cancer, in American Cancer Society Textbook of Clinical Oncolggy. Atlanta, GA: American Cancer Society. 71 72 Howe, H. L., Johnson, '1'. P., Lehnherr, M., War-necks, R. B., Katterhagen, J. 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