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'v y o "‘ ‘ H - . on >’ ‘ ' - ‘ .d— A ' ,-. ;.. ; .. :1- - ,J a“ -r.:= I ‘ ' . fl- -' 2‘5- ' ‘ 7' ' ’ : ' ' - .J , _-J " ,‘p ’ l ‘_ (- . _'__A . ‘ d ‘- I Em, 1::- 50 ~ rests. w ,9.) ‘ 1'1 u u Imam-lit - - Diem-II ;' '-¢__ '5. ' ,..;-~-.-... Ii fizmzm Had -‘u-‘u- , I 0 ~ «.1 .. '1'35‘?‘ wage: cm!" can. i Viv-— This is to certify that the dissertation entitled Broken Health Screening Appointments Among Low Income Families presented by T. Richard Currier has been accepted towards fulfillment of the requirements for degreein_§gc_igl_scj_ence Jan // Major professor V Date February 7, I986 MS U i: an Willem! Action/Equal Opportunity Inflation 0-12771 MSU LIBRARIES :— RETURNING MATERIALS: Place in book drop to remove this checkout from your record. FINES will be charged if book is returned after the date stamped below. BROKEN HEALTH SCREENING APPOINTMENTS AMONG LOW INCOME FAMILIES by Richard Currier A DISSERTATION Submitted to Michigan State University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Department of Social Science 1986 finial/(0:33; ABSTRACT BROKEN HEALTH SCREENING APPOINTMENTS AMONG LOW INCOME FAMILIES by Richard Currier Missed appointments for health care create costly ineffi- ciencies for medical providers, threaten the validity of research efforts, and often subject the person involved to unnecessary morbidity. Many studies have been conducted on appointment keeping behavior of patients to ascertain predictors of persons who fail to appear and who, reportedly, average 15 percent to 33 percent of all scheduled appoint- ments. Most studies focus on demographic factors. Few studies take into account variables related to patient be- liefs, social behavioral and perceptual characteristics, aspects of the disease, its therapy, patient-provider in- teraction, and environment and organizational features of the providing facility. The present study attempts to exam- ine the relationships of a large number of variables included in previous studies believed to be correlates of appoint- ment keeping behavior. The data were collected in a compre- hensive survey conducted on eligible Medicaid persons in Michigan who have been scheduled for a health screening ap— pointment. The survey should identify correlatives of ap- pointment keeping behavior. To accomplish this, a cluster analysis was used to form clusters of variables that Richard Currier illuminate patient attributes relative to appointment keeping. Few findings of other studies have been confirmed in this research. However, one result is clear, namely, the shorter the time between scheduling and appointment, the more likely it is that an appointment will be kept. For the most part, the 81 variables measured showed little correlation with scheduling outcomes. It seems reasonable to conclude that, for future research on appointment keeping, investigators should explore the contribution of specific factors to appointment keeping behavior. DEDICATION to Fran Gram who is the music to these words ii ACKNOWLEDGEMENTS The example and encouragement of George W. Fairweather will long be remembered. Six years ago, at Ocean's Edge, when fainter hearts asked, why? He said, "Why not?" For his direction in a course that was long and sometimes stormy, I owe much to Professor Fairweather. A special thanks is due to Delrose Komosinski who provided timely and expert typing of this manuscript. iii I. II. III. Iv. TABLE OF CONTENTS INTRODUCTION Background. . . . . . . . . . . . Assumptions . . . . . . BACKGROUND OF THE PROBLEM History of Health Screening . . History of EPSDT in the United States Need for Health Screening Among The Poor. . . . . . . . . . . . . . . Major Stumbling Block for Success of EPSDT. . . . . . . . . . . . . A Review of Previous Studies on Failure to Keep Appointments. . . . . Specific Hypotheses . . . . . . . . . METHODOLOGY Sampling. . . . . . . . . Scoring and Field Testing of. Survey Instruments . . . . . . . . . . . . . Method of Analysis. . . . . . . . . . RESULTS Test of Hypotheses. . . . . . . . . . Relationship Among Measures . . . . . Cluster Description . . . . . . . . . DISCUSSION . . . . . . . . . . . . . . APPENDICES A. Letter of Invitation. . . . . . . B. Client Questionnaire. . . . . . . C. Client's Opinion Questionnaire. D. Medical Outreach Worker Questionnaire . . . . . . . . . . BIBLIOGRAPHY . . . . . . . . . . . . . . iv 22 25 27 49 53 66 67 69 97 104 120 148 149 152 156 158 LIST OF TABLES Conditions Currently Recommended for Screening Programs . . . . . . . . . . . . . . . . . Inventory of EPSDT Screening Procedure as Typically Used in State Programs . . . . . . . . . . . Distance of Patient From Clinic. . . . . . . . . . . Test of Patient Demographic Characteristics and Appointment Keeping. . . . . . . . . . Distribution of Responses on Each Demographic Measure by Percent . . . . . . . . . . . . . . . . . Test of Patient Related Social Behavior or Perception Variables and Appointment Keeping . Distribution of Responses on Each Social Behavior or Perception Measure by Percent . . . . . . . . Test of Provider Related Characteristics and Appointment Keeping. . . . . . . . . . . . . . . . Distribution of Responses on Provider Related Characteristics by Percent . . . . . . . . . . . . . . Test of Characteristics of the Disease and Appointment Keeping. . . . . . . . . . . . . . . Distribution of Responses to Disease Characteristics by Percent . . . . . . . . . . . . . . Test of Characteristics of the Therapeutic Regimen and Appointment Keeping. . . . . . . . . . . . Distribution of Responses to Therapeutic Regimen Characteristics by Percent . . . . . . . . . . Test of Patient-Therapist Interaction Characteristics and Appointment Keeping. . . . . . . . Distribution of Responses to Patient-Therapist Interaction Characteristics by Percent . . . . . . . . 16 40 71 72 73 74 77 78 79 80 83 84 86 87 Test of Facility Accessibility and Appointment Keeping. . . . . . . Distribution of Responses to Facility Accessibility Characteristics by Percent Test of Facility and Administrative Process Characteristics and Appointment Keeping. . . . Distribution of Responses to Facility/Adminis- trative Process Characteristics by Percent . Test of Characteristics of the Environment and Appointment Keeping. . . . . . . . . . . Distribution of Responses to Characteristics of the Environment by Percent. . . . . . Variables Found to be Significantly Correlated With Appointment Keeping at the .05 Level of Confidence . . . . . . . . . . . . . . . . . Variables Found to be Significantly Correlated With Appointment Keeping at the .10 Level of Confidence . . . . . . . . . . . . . . . Nine Clusters of Scale or Variable Scores. Correlation Between Oblique Cluster Domains. . vi . . . 88 . 88 . 91 . 92 94 . 95 . . . 97 . 98 . . 103 105 I. INTRODUCTION Background Today emphasis in health care is shifting increasingly toward prevention. This is due largely to the growing aware— ness in the general public that the major sources of illness are damaging personal behavior, e.g., smoking or lack of exercise, and the environment in which we live. To a certain extent, we have control over, or at least power to modify, both sources of ill health in that we can change our behavior or improve our environment. Another important development fostering preventive orientation to health care delivery is advancement made in science whereby it is possible to detect defects and disease in early stages of development when re- medial care is most likely to be effective. Escalating costs in correcting health problems is, per- haps, the strongest force for raising the consciousness of people towards the need for prevention, early detection, and treatment. Government is faced with these costs in providing health care for low income families. The cost of providing comprehensive medical care to the medically indigent can be controlled and even reduced if there is effective cooperation between providers of services and recipients. The need for this cooperation is illustrated most strikingly in a national health screening program supported by federal and state funds for children of low income families. In this study, we will briefly look at the nature of screening, its history, its 1 current form in the Early and Periodic Screening Diagnosis and Treatment (EPDST) Program, and then focus, primarily, on a major stumbling block in achieving the goals of mass screening, namely, failure to keep scheduled appointments. Assumptions There is a vast sea of literature relevant to the problem of missed appointments for health care. This re— search will attempt to look at, comprehensively, the myriad of variables examined by other researchers in order to iden- tify those variables associated with appointment keeping be- havior. To achieve the goal of this study, certain assump— tions are necessary. It is assumed that the attitudes and behavior regarding one's own health care will be extended to one's attitudes and behavior toward health care for the children in one's care. Very little research has been done on this issue. Jayne Linley (1984) found that the mother's view of health and the health care system ultimately determines the kind of health care the child receives. Furthermore, the health behavior of a caregiver is defined by the culture. In most instances, poor health habits, undue risk taking in health matters, delay in seeking health care, and disregard to me- dical advice are direct reflections of social attitudes (Suchman 1970). Becker, et a1, (1977) showed that the health beliefs of the mother are critical in utilization of preventive care for young children. These findings have important implications in the health treatment of children. The health care provider must take time to include the care- giver in the planning process for health care of the child, promote caregiver interactions, elicit caregivers reviews about the child, provide to the caregiver an understanding of the health needs of the child and, in general, provide encouragement. II. BACKGROUND OF THE PROBLEM History of Health Screening From ancient times, efforts were made to screen out members of a society as a method of prevention. Isolation, banishment, and even death were effective in achieving this purpose. Leprosy, for example, was effectively controlled in Europe, in part, by isolating lepers in leprosaries, which, by the 13th century, could be found everywhere through- out Europe (Winslow 1923). Late 18th and early 19th century progress focused on environmental sanitation, as it was gradually realized that somehow poverty and filth were associated with disease. This development was stimulated, primarily, by writings of John Howard (1773) on British prisons, by Anthony Cooper's (1802) writings on child laborers in British factories, and by Ed- win Chadwick's writing on the conditions of the laboring population of Britain in 1842. Britain's Sanitary Act of 1886 followed by similar legislation in America (Winslow 1923) was the result of this new awareness. The modern age of preventive medicine must be credited to Louis Pasteur. His studies of fermentation ultimately led to an understanding of the relationship between micro- organism, environment, and host, thereby placing preventive medicine on a truly scientific basis. In the 1880's, vac- cination was developed for cholera, anthrox, rabies, diph- theria, typhoid, and smallpox. Koch described the tubercle 4 bacillus and his theories became the cornerstone of micro- biology (Winslow 1923). With these historic developments, preventive medicine could expand from public health, with its emphasis on en- vironmental efforts, to the early diagnosis and treatment of individual persons. The new understanding, also, pro- vided a foundation for future possibilities of screening large numbers of people, based on the idea of early de- tection of clinical and laboratory signs before onset of clinical symptoms. Public Health reached its Golden Age during 1890 — 1910 because of the application of scientific discoveries to the prevention of disease. Malaria, yellow fever, bu- bonic plague, typhoid, typhus, cholera, diphtheria, small- pox, pertussis, and tetanus were brought under control. More importantly, the success lead to the replacement of a feeling of helplessness to one of great optimism. Armed with new understanding, we were in a position to gain consi- derable control over our health and well-being. In 1909, the National Committee for Mental Hygiene (MCMH) was founded by Clifford Beers. The remarkable achieve- ments of preventive medicine and public health provided the philosophical and methodological foundation for this organi- zation. MCMH predicted that mental disorders would be con- quered, just like the infectious diseases, if only the Ameri- can people could be trained to recognize early signs of ment- al disease (MCMH 1912). It was assumed that what worked for the disease of the body would also work for those of the mind. The introduction of science into the realm of preven- tive health led to pre-occupation with measuring things, charting progress, and generally moving beyond speculation into the realm of quantitative data. This new technology of measurement was soon applied to gauging intelligence and predicting behavior. Early diagnosis and treatment of the criminal and the juvenile delinquent became a priority item with the advent of large numbers of immigrants to ur— ban ghettos (Russell 1912, p. 189). The First World War institutionalized the practice of measuring mind and be- havior. Thousands of soldiers were tested for the purpose of military classification (Brigham 1923). The testing of intelligence became generally accepted so that IQ became a household word. About this time, also, the eugenics move- ment developed and adopted the practice of screening. In the 1920's, there arose the child guidance movement. This movement served as the major vehicle by which juvenile delinquency was to be controlled. The child guidance move-‘ ment saw the converging of the three new disciplines of psychoanalysis, juvenile court case work, and psychological assessment. The child psychiatrist, social worker, and psychologist formed an interdisciplinary team that became an arm of the juvenile court (Healy 1948). Freud's emphasis on early childhood was entirely consistent with the preven- tive goals of Adolph Meyer and other founders of the mental hygiene movement who, themselves, were crucial figures in organizing the child guidance movement (Stevenson 1948). The American Foundations (especially the Commonwealth Fund and the Rockefeller Foundation) became the primary backers of the new delinquency prevention efforts (Karier 1972). The goal was a child guidance clinic in every community as the best weapon against juvenile delinquency. It was deemed vastly preferable to identify and treat a would-be delinquent rather than wait until the person became a hardened criminal. In the 1930's and 1940's, the practice of measuring skulls or earlobes as well as the widespread belief in gene- tic factors in criminality and deviance prediction fell into disrepute. Despite this screening and other brave efforts, there was a gradual waning hope. The techniques of predic— tion never materialized; juvenile deviance seemed, if any- thing, to be growing despite the spread of child guidance clinics. It became apparent that, notwithstanding the hopes of the mental hygiene movement and the child guidance move- ment, nothing comparable to the glorious revolution in pub— lic health was on the horizon. Accordingly, sights were set more realistically and greater availability of services to children and families became the goal. Delinquency no longer dominated the concerns of mental health screening. It was believed that psychonalysis helped many, and attention was increasingly turned away from the large number of poor. After World War II, with the influx of federal dollars, the National Institute of Mental Health (NIMN) was organized in 1949 and, ultimately, the Community Mental Health Centers Act of 1963 formalized the relationship between federal dol— lars and psychiatric programs. This gave rise to new inter- est for a public health model for prevention of mental prob- lems. If the 19th century attributed madness to the lack of discipline, hard work, and the other virtues of rural America, and the early 20th century looked for bad genes, bad hygiene, and lack of education, by the mid-20th century there was a concern, more and more, of early treatment of biochemically based mental disease. In more recent years, schools of thought in public health made more precise a definition of health screening, health problems to be screened for, and criteria for health screen- ing tests. Definition of Health Screening The United States Commission on Chronic Illness, in 1957, proposed a definition of health screening as follows: "The presumptive identification of unrecognized disease or defects by the application of tests, examinations, or other procedures which can be applied rapidly. Screening tests sort out, ap— parently, well persons who probably do have the disease. A screening test is not intended to be diagnostic. Persons with positive or suspicious findings must be referred to their physicians for diagnosis and necessary treatment." Health Problems to be Screened. Since 1951, scientists have recommended screening for an increasing greater number of conditions. A few of the pediatric conditions suggested for screening (Camp 1957, p. 9), are listed in Table I. TABLE I Conditions Currently Recommended For Screening Programs Hearing Vision Speech Language Development School Readiness Lead Poisoning Anemia Sex Chromosome Abnormalities Congenital Dislocation of Hip Rheumatic Heart Disease Inguinal Hernia Congenital Heart Disease Dental Problems Apgar Bacteriuria Tuberculosis Venereal Disease Color Blindness Phenylktetonuria Maple Syrup Urine Disease Hypercholesterolemia Hyperlipoproteinemia Wilson's Disease Calactosemia Hereditary Angioneurotic Edema Cretinism Mellituria Succinylchonilesterase Deficiency Glucose-6—Phosphate Dehy- drogenase Deficiency Gargoylism Tay-Sachs Disease Learning Disorders Criteria for Health Screening Tests Screening seeks to identify a disease or developmental delay at an early state or prior to that point in time when treatment is less effective. The time should ideally be prior to signs and symptoms that would normally be noticed by the individual or guardian since, usually, diagnosis is sought after signs begin to appear. A careful distinction should be made between health screening and health services. The former is an attempt to find health problems, while the latter is remedial in nature. To meet the objectives of screening, efforts must generally meet certain criteria such as those outlined by William Frankenburg (1978). The criteria are as follows: 10 The Condition Is Potentially Serious. The seriousness takes into account such factors as remedial costs, if delayed; loss of earning power in the future; spread of disease, if not checked; permanency of the damage; human suffering involved; and the like. There is a point when the cost of locating a malady out- weighs the screening investments. A balance needs to be struck between screening and treatment. The screening procedures used can effectively iden- tify persons at risk. Most conditions related to health follow a continuum with many shades of gray. It is quite useless to screen for conditions that cannot be identi- fied specifically enough to warrant remedial care. Treatment Is More Effective With Early Intervention Than If Delivered When The Condition Becomes Obvious. Treating a child for the muscle imbalance in the eye (amblyopia) after the age of five is ineffective. Intervention prior to that age can prevent blindness and may result in restoring normal sight to the eye. This is an example of where a screening test is criti- cal for identifying the individuals needing early in- tervention. The Condition Is Treatable Or At Least Controllable. Since health screening is justified as a means of enhancing the health of the individual if a dangerous condition is uncovered, but no treatment is available, it is quite obvious that the very purpose of screening 11 is defeated. Some may question, as an example, the value of screening for sickle cell anemia since there is no known remedy for this condition. Since sickle cell is genetically based, the objective of screening in this case is not to treat but to control by provid- ing counseling. The Disease Should Be Relatively Prevalent. The disease of smallpox is now so rare that time, expense, and effort to find cases of it are relatively fruitless. The rarer the disease, the greater are the resources needed to find it. Therefore, a balance needs to be established between the prevalence of a disease, and the amount of resources available to find it. The Procedure Does Not Cause Undue Harm To The Individ- ual Tested. Invasion of privacy and stigmatization can easily occur on finding sickle cell anemia. Job opportunities may be limited or promotions denied as a result of the disease. Provision must be made to prevent harm to the individual in screening, especially since clients are aggressively sought after in the screening process rather than the reverse, that is, when a client seeks health care for a known and felt health problem. Resources Are Available For Remedial Care When A Problem Is Found. This requirement for justifying a health screening relates to the previous requirement regarding avoiding harm to the individual being screened. If resources 12 are not available to the individual being screened, the anxiety of the person is raised by uncovering the health problem. Cost For Both Discovery And Remedy Should Take Into Ac- count Both Monetary And Human Misery Dimensions. Monetary costs include collecting specimens/infor— mation, testing, equipment, maintenance, supplies, ad- ministration, follow-up, record-keeping, diagnosis, and treatment to name some of the areas. The investment of human misery in the discovery and treatment process is to be weighed against fiscal considerations. Screening tests are to be characterized by accept- ability, reliability, and validity. The acceptability of a screening test refers to the consensus among health professionals, and the general public as well. Tests that are painful or embarrassing are less likely to be accepted by the public. Reliability refers to consist- ency of getting the same results from a test when per- formed by different peOple. Validity refers to the ac- curacy of the test in uncovering a specific health con- dition that needs care. It is not expected that a sub- sequent diagnosis will agree with findings from a screen- ing process as testing involved in diagnosing a problem are much more elaborate and specific than would be used in a screening program. The problem is not with the false positives, but with the false negatives in which case a health problem goes undetected in the screening. 13 History of EPSDT in the United States The Early and Periodic Screening, Diagnosis and Treat- ment (EPSDT) Program, with its roots in the screening efforts in the past as reviewed above, blossomed in the liberal at- mosphere of the 1960's. The civil rights movement, and the ghetto uprisings left, in their wake, a vast array of anti- poverty programs designed to lead to the "Great Society". Unfortunately, there was often a tendency to "blame the victims" (Ryan 1972). Various forms of deviance (school failure or dropout, family breakdown, violence, drug abuse, and the like) were conceputalized as indications of some type of deficiency or deprivation syndrome of poor peOple. The remedy usually involved doing something to the needy, aimed at improving their lives in someway. High among the objectives of the "Great Society" was good health to poor children. The Department of Health Education and Welfare (DHEW) formulated the Early and Perio- dic Screening, Diagnosis, and Treatment (EPSDT) program, and submitted it to President Johnson who signed it into law in January, 1968. The program was designed as an amendment to Title XIX of the Social Security Act through which pay- ments were made for medical services delivered to the poor. The EPSDT amendment went beyond a mere payment system for medical care requiring states to provide "such early and periodic screening and diagnosis of individuals who are eligible under the plan and are under the age of 21 to as- certain their physical or mental defects and such health 14 care, treatment, and other measures to correct or amelior- ate defects and chronic conditions discovered thereby, as may be provided in regulations of the Secretary." (Public Law 90-248, Sec. 302a) States are required to provide screening and certain other types of diagnosis and treatment for hearing, dental, and vision problems even if these are not already included in the Medicaid State Plan for Medicaid eligible individuals. Persons under the age of 21 also are to receive all mandated Title XIX services apart from EPSDT, including inpatient and outpatient hospitalization, physician services, labora- tory and x-ray services; and family planning. They may also receive other Optional services under the State Medicaid plan. The unique aspects of EPSDT include: - Arrangements for screening when they are not otherwise available. - Specific standards for screening. - A systematic attempt to integrate children into health screening, diagnosis, and treatment through outreach, referral, and follow-up, - Health education. - Provision for diagnosis and treatment of hearing, dental, and vision problems if they are not otherwise included in the State plan. The EPSDT program can be briefly conceptualized in the fol- lowing manner: Goal: To improve the health status of Medicaid- eligible children under the age of 21. Objective: To prevent chronic disabling illness. To increase treatment where appropriate. 15 To change the attitudes of recipients in the area of health care. Sub-objectives: To introduce recipients into the health care system as early as possible. To establish continuity of health care. To establish a comprehensive evaluative base for health care. To increase the accessibility and avail- ability of health care systems. To increase recipient awareness of health measures and encourage their use as appro- priate. The principal assumptions on which the EPSDT program is based are that: - Health can be improved through medical intervention. - Medical intervention is best done through the early diagnosis of problems. - Early diagnosis is best done through preventive screen- ing. - Preventive screening is best done through a government program. - Appropriate government programs are not now available. - If available, this program would be utilized by potential clients. — Problems uncovered would be treated rapidly. - Treated problems would be corrected successfully. — Medicaid-eligible children are most in need of health improvement. - Medicaid-eligible children are without alternative delivery systems. - Medicaid-eligible children would use this special government program. 16 sumo Hmucov ou mmmoom ousmmm ou Hammm a“ surname“ ma moua>uom Hmuaov mo uamcanoo m .mouawoooua uaoaummuu mam Ufiumocwmfiv Hmusov poms HHH3 sou Icafiso Ham umoaHm umsu mmuUHvoum on new uH moafiw .mwm mo memo» moo akucm3u 0m 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