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Trends in transition from pediatric to adult health care services for young adults with chronic conditions
JOURNAL OF ADOLESCENT HEALTH 1999;24:259–264
ORIGINAL ARTICLE
Trends in Transition From Pediatric to Adult Health Care Services for Young Adults With Chronic Conditions PETER SCAL, M.D., THEORA EVANS, M.S.W., M.P.H., Ph.D., SHELLEY BLOZIS, Ph.D., NANCY OKINOW, M.S.W., AND ROBERT BLUM, M.D., Ph.D.
Purpose: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling conditions that assist in transitioning from child- to adult-focused health services by (a) discrete types, (b) functional categories, and (c) problems and issues faced by these programs. Methods: Nominations for transition health services programs were solicited from 1025 organizational agencies at the local, state, regional, and national levels. Two solicitations yielded 277 nominees. After pilot testing, a survey of 163 forced responses and open-ended questions was mailed to each nominated transition health services program. A total of 122 programs returned completed surveys. Results: Program services were categorized as adolescent-focused (38%), condition-focused (36%), and specialty-specific programs (26%). Few programs were primary care-based. Categories were subsequently collapsed into two types: adolescent-focused and condition-focused. No significant differences were noted between adolescentand condition-focused programs regarding provision of
From the Department of Pediatrics (P.S.); the Division of General Pediatrics and Adolescent Health (T.E., R.B.); the Center for Children with Chronic Illness and Disability, Department of Pediatrics, (S.B.); and the National Center for Youth with Disabilities, Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota (N.O.). N.O. has since moved to Phoenix, Arizona, where she is the director of the Huntington Learning Center. S.B. has since moved to the Department of Psychology, University of Texas, Austin, Texas. Address reprint requests to: Theora Evans, M.S.W., M.P.H., Ph.D., Division of General Pediatrics and Adolescent Health, Department of Pediatrics, University of Minnesota, Box 721 Mayo, 420 Delaware St. SE, Minneapolis, MN 55455. Manuscript accepted February 6, 1998.
mental health services, vocational counseling, self-efficacy training, or health education. The primary barriers to transition health services were identified as funding and access to key staff, rather than family and adolescent resistance. Conclusion: In general, self-identified transition health care programs do not achieve the goal of collaborative, coordinated, and integrative services to adolescents with chronic or disabling conditions. Furthermore, the barriers to attaining the goal are the limitations of the health care system itself. © Society for Adolescent Medicine, 1999 KEY WORDS: Transition health services/programs Adult-focused care Anticipatory guidance Chronic physical conditions
Over 90% of children born today with chronic or disabling conditions will survive beyond their 20th birthday (1). By comparison, in 1973, the mean age of survival with cystic fibrosis was 7 years; today, in much of the industrialized world, it is more than 30 years. Twenty-five years ago, less than one-third of young people with spina bifida survived to the age of 20 years; today, over 80% will. We have seen comparable increases in the life span of children with most every condition. In 1994, Newacheck et al. (2) reported that 8.6 million young people ages 10 –17 years had a chronic condition (31.5% of the population), of whom 1.4 million experienced functional limitations. The work of Gortmaker et al. (3) suggested that many of these
© Society for Adolescent Medicine, 1999 Published by Elsevier Science Inc., 655 Avenue of the Americas, New York, NY 10010
1054-139X/99/$–see front matter PII S1054-1398(98)00127-X
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young people will reach adulthood without difficulty. For others, however, without assistance, an independent, functioning adulthood may not be achieved. For such youth to achieve autonomy, the provision of early collaborative, integrated, and coordinated educational, vocational, and health services should be available and accessible. These youth, as will their peers without chronic and disabling conditions, may have to cross multiple domains of transition concurrently. Transitions may include movement from home with family to independent or group living with peers; from pediatric, child-centered care to adult-oriented health services; and from school to work or unemployment. In the field of education, individualized transitional planning is a reality. The impetus for this transition mechanism was PL 101-476, Individuals With Disabilities Education Act (IDEA). Its goal is the preparation of youth for work. In health, transition planning is not universally in place. In 1992, Slap (4) defined transition in health as purposeful movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care. Blum et al. (5) articulated fundamental elements for transition health services: (a) professional and environmental or institutional support for the concept of transition of health care; (b) recognition and encouragement of the change in the process of decision-making and consent from the parent caretakers to the adolescent; (c) family support; (d) professional sensitivity to psychosocial issues of disability; (e) primary and preventive care in addition to medical management of the chronic illness or disability; and (f) health education (5). Thus, the range of services in transition health programs should not merely manage physical functioning, but should provide anticipatory guidance for social functioning as well. In health care, transition services are emerging. The literature (6 –9) addressing the transitional health services framework envisions uninterrupted, comprehensive, coordinated, integrated, and developmentally appropriate programs. The rationale for this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Based on the literature describing individual programs, it was hypothesized that: (a) most transition services will be subspecialty-based with strong mental health services but relatively fewer social, vocational, and other health care services; (b) transition services will follow definable patterns: subspecialty based (e.g., pulmonary medicine), disease-based
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(e.g., cystic fibrosis), primary care-based, and adolescent health-based; and (c) patient and family resistance will be identified as the primary barriers to effective transition planning (4 – 6). This study was undertaken to identify and characterize programs providing transition health services for adolescents and young adults in the United States.
Methods The first phase of the study was to identify programs across the country that incorporate one or more of the fundamental elements of transition health services as articulated in a position paper of the Society for Adolescent Medicine (5). An initial one-page survey was sent to the directors of state agencies for children with special health needs, state-level adolescent health coordinators; Society for Adolescent Medicine members with an identified interest in youth with chronic conditions; university-affiliated programs directors; disease-specific organizations (e.g., Spina Bifida Association, Cystic Fibrosis Foundation); state parent advocacy organizations; rehabilitation research and training center directors; and all nonduplicated members of the American Academy of Pediatrics, section on Children with Chronic Illness and Disability. A total of 1025 initial surveys were mailed with the intent of soliciting transition health service program nominations. Based on two waves of mailing four weeks apart, a response rate of 32% (n 5 331) was achieved, with 277 unique programs nominated. An in-depth follow-up questionnaire mailed to each nominated program was developed to identify the structure, functioning, problems, and issues faced by transition health services programs. The questionnaire, after pilot testing with 20 organizations, included 163 forced response and open-ended questions covering: (a) program/clinic goals and objectives, (b) descriptive information on both the available services and the health care team providing services, (c) funding issues, (d) barriers encountered in meeting objectives, and (e) types of program evaluation used. The 277 nominated programs were sent two waves of surveys four weeks apart. Completed questionnaires were received from 126 programs. Twenty-nine additional programs returned their blank questionnaires, indicating that health care transition was not a part of their clinical service; thus, a total of 155 surveys were returned, for an overall response
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rate of 46%. The 126 responses represent 122 programs offering transition services, three in various stages of development and one which no longer existed.
Data Analysis Responses to questionnaires were summarized by two-way contingency tables. Responses to questions were evaluated with respect to program type (adolescent-focused vs. condition-focused). While many response options were of the “yes/no” format, some had up to four response choices. Items characterized by more than two choice options were dichotomized by collapsing together particular response choices. Responses to items were then analyzed by comparing differences in response proportions conditional on program type. For each comparison, the log odds ratio (log uˆ ) is reported, and its asympototic standard error (ASE) and a 95% confidence interval (CI) for the odds ratio, u (10). CIs for the odds ratio containing the value 1.0 indicated no difference in the proportions with regard to program type. Condition-specific programs (n 5 60) were defined as those that had a primary focus on one condition. These included neurologic, 37%; cystic fibrosis, 13%; developmental disabilities, 12%; diabetes, 7%; arthritis, 5%; hemophilia, 5%; sickle cell, 5%; and congenital heart disease, 2%.
Results Program focus. Programs were categorized as providing services which were condition-specific (36%); specialty-specific, providing services for a range of related health conditions (26%); and adolescent health oriented, providing transition services for a range of chronic or disabling conditions (38%). Few programs were based on a primary care model. Further analysis made it difficult to distinguish condition- and specialty-specific services; most respondents used the two interchangeably. Thus, further analysis dichotomized programs as adolescent-focused and condition-focused. Planning and development. Transition health services were reported as often involving a multidisciplinary team, with the core team including a nurse (47%); pediatric subspecialist (44%), and a social service provider (41%). While a number of programs reported youth (15%) and family (22%) involvement, few actually involved either group in the planning or
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Table 1. Priorities of Surveyed Transition Health Services Programs Priority
%
Adolescent and psychosocial well-being Medical issues of chronic condition Adolescent primary health concerns Family well-being Vocational needs of youth Advocating for adolescent needs Teaching self-advocacy skills
95 90 85 84 56 38 25
Note. n 5 126. Percentage represents service and advocacy goals for transition health services programs.
development of the clinic. Overall, consumer involvement, when it was sought at all, was limited primarily to satisfaction surveys. The adolescentfocused programs were nearly twice as likely to report adolescent involvement in program planning and development when compared to the conditionfocused programs (21% vs. 12%), although the difference was not statistically significant [log uˆ 5 1.99, ASE 5 0.50, 95% CI for u: (0.74, 5.32)]. Even so, only one in five adolescent-focused programs involved young people other than as patients. Conversely, condition-focused programs were more likely to involve pediatric subspecialists (56% v. 26%) and adult subspecialists (30% vs. 9%) compared with the adolescent-focused programs. These differences were significant for both pediatric subspecialists [log uˆ 5 1.33, ASE 5 0.41, 95% CI for u: (1.71, 8.35)] and for adult subspecialists [log uˆ 5 1.50, ASE 5 0.58, 95% CI for u: (1.45, 13.98)]. The overarching priorities of the transition health service programs surveyed are provided in Table 1. Condition-focused programs identified the medical issues of the chronic condition as a key goal significantly more often than did adolescent-focused programs [77% vs. 54%; log uˆ 5 0.97, ASE 5 .39, 95% CI for u: (1.22, 5.66)]. On the other hand, adolescentfocused programs showed a trend toward identifying adolescent health concerns as a central goal more frequently than condition-focused programs [48% vs. 32%; log uˆ 5 0.67, ASE 5 .38, 95% CI for u: (0.93, 4.09)]. Services provided. To identify the range of services offered in transition health service programs, respondents were asked to select services from the menu provided (Table 2). A total of 72% of programs reported offering case management services, usually provided by a social worker (45%) or a nurse (40%). The exact nature of case management was not specified. Condition-focused programs reported subspe-
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Table 2. Services Provided in Transition Health Services Programs Service
%
pediatric subspecialists (3%). Family and adolescent resistance to transition services were rarely reported by respondents as barriers to program development.
Clinical medical Mental health Mental health, available via referral or consultation Physical, mental health, and vocational (combination provided in some form) Case management
78 57 37 70
Discussion
72
Note. n 5 126. Percentage represents services currently provided by transition health programs.
cialist contact on every visit twice as often as adolescent-focused programs [56% vs. 25%; log uˆ 5 1.36, ASE 5 0.40, 95% CI for u: (1.76, 8.57)]. No significant differences were noted between adolescent- and condition-focused transition programs regarding provision of mental health services [60% vs. 63%; log uˆ 5 20.10, ASE 5 0.38, 95% CI for u: (0.43, 1.89)], career/vocational counseling [42% vs. 42%; log uˆ 5 0.03, ASE 5 0.37, 95% CI for u: (0.47, 2.02)], selfadvocacy training [38% vs. 41%; log uˆ 5 0.38, ASE 5 0.36, 95% CI for u: (0.72, 2.99)], or health education [77% vs. 76%; log uˆ 5 0.08, ASE 5 0.43, 95% CI for u: (0.46, 2.53)]. Funding. The survey sought to identify how transition health service programs were financially sustained beyond the reimbursement for direct clinical services. This question is particularly important in light of the changes occurring in health care financing for youth with special health care needs. Program support, when available, came from a variety of sources: For program development, a minority of programs were successful in obtaining such support, but where it existed, funding came from the federal government (33%), state government (33%), foundations (18%), or institutional funds (36%). Transition services were reimbursed primarily from fee-forservice billing (83%). In addition, clinical contracts with health maintenance organizations (HMOs) were important sources of support for 58% of patients. Federal grants (20%), state or local grants (31%), and private foundations (12%) were also important sources of funds for covering clinical service costs. Barriers. Respondents identified a number of barriers to developing transition programs. The primary concern centered on funding (41%). In addition, a major barrier for a number of programs included access to: adult primary care providers (34%), adult subspecialists (21%), pediatric primary care (6%) and
The dramatic increases in survival of young people with once life-threatening childhood health conditions requires changes in adult-oriented care. Youth with complex chronic health conditions require services and programs that support, advocate, and facilitate both their physical functioning and their resilience. Given increased survival of children with chronic conditions, the rising interest in transition issues has resulted in increased research, much of it editorial in nature (11–15), or clinic descriptions (16 –19). The present study is the first empirical survey of existing transition health services, documenting not only how they are organized and financed, but also the barriers they encounter. The literature suggests the primary goal of transition health services should be to maximize functioning and well-being (13). While such may be the goal, a position paper of the Society for Adolescent Medicine suggests that the focus has been on disease rather than on functional outcomes (5). The present study confirms that observation. Specifically, physician contact was the cornerstone of most every program, with nearly all programs reporting client– physician contact at almost every visit. While Slap (4) indicated one of the roles of successful transition health service programs is to prepare young people to negotiate the adult health care system independently, the present study indicates that only one in four programs surveyed even acknowledge this area as important. Likewise, while vocational counseling is critical for maximizing adult functioning (20), only slightly more than half of the programs surveyed saw this to be an important issue, and fewer than one in five provided for vocational counseling services. The present study hypothesized that most programs would be subspecialty-based. This proved to be true for those that clustered as condition-focused; however, for nearly two out of five programs, the focus was on adolescents themselves rather than their disease, and services were more broadly based. It was further hypothesized that, other than subspecialty medical care, mental health services would predominate as a cornerstone of transition health services. Clearly, such was the case. Nearly three of five programs reported consistent availability of mental health services within the program, and an
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additional third indicated such services were available upon referral. As with the medical services, provision of mental health counseling, and especially referral services, may reflect more of a problem orientation than one directed toward anticipatory guidance. Vocational counseling, advocacy skills training, and consumer education were significantly lower priorities. An additional hypothesis was that programs would cluster into four distinct groups: primary care, adolescent health, disease specific, and subspecialty. This hypothesis was based upon the Society for Adolescent Medicine position paper (5). While there was some indication that discrete types of services exist, careful analysis showed few differences among them. Specifically, few programs self-identified as primary care; those that were most inclusive saw themselves as adolescent health-focused. Likewise, while nearly equal percentages of respondents defined their service as disease- and subspecialty-specific, few differences were found between these two groups, and it became evident that respondents viewed these two categories as interchangeable. Thus, we are left with two functional categories: condition-focused and adolescent-focused. While certain generalizations can be made that distinguish these two groups (e.g., frequency of subspecialist contact), no differences were found among most services (e.g., mental health, vocational counseling, self-advocacy, or health education). Thus, it makes little sense to talk about service types. We also hypothesized that the providers would identify the most significant barriers to transition health service to be related to patient and family resistance. These issues have been recurrently identified in the literature as perceived barriers to developing effective transition health services (19). Interestingly, few respondents viewed young adult patients themselves or their parents as important barriers to developing transition health service programs. Rather, the lack of adult medical providers interested in transition health issues appeared to be the primary obstacle. This may reflect a primary focus on medical issues rather than the broader social, developmental, and familial concerns. Concurrently, the latter may confirm what has been reflected in the literature as a lack of training in transition health issues. In 1987, Blum (22) found in a national survey that only half of responding physicians reported being adequately trained in facilitating transition health care. Adult practitioners continue to have limited experience in managing what have historically been chronic conditions of child-
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hood despite the fact that over 90% of persons with these conditions will survive beyond their 20th birthday. The study is limited in a number of ways. Using a nomination technique might have precluded identification of some important programs. Likewise, only 46% of the nominated programs responded to the survey. Thus, there may be some data from nonresponding agencies that would have influenced the findings of the present study. However, the methodology used did allow for the identification of a large number of potential agencies for inclusion in the study, representing the largest sample of transition health services ever identified.
Conclusions The goal of developing a coherent system that allows for transition from pediatric to adult health care has yet to be achieved. The transition process is evident in health services when the following elements are in place: (a) professional and environmental, or institutional support; (b) decision-making and consent; (c) family support; and (d) professional sensitivity to the psychosocial issues of disability (5). The findings of the present study indicate that self-identified transition health care programs in general are not providing collaborative, coordinated, and integrative services to adolescents with chronic or disabling conditions. Furthermore, it appears that the barriers to attaining this goal are not the resistance of adolescents or their parents, but limitations of the health care system itself. This study was supported, in part, by the Center for Children with Chronic Illness and Disability, Grant H133B40019 of the National Institute on Disability and Rehabilitation Research; and Project Connect, Grant 1MCJ27R002-02 of the Maternal and Child Health Bureau, Health Services Research Administration.
References 1. Gortmaker SL, Sappenfield W. Chronic childhood disorders: Prevalence and impact. Pediatr Clin North Am 1984;31:3–18. 2. Newacheck PW, Hughes DC, Stoddard JJ, Halfonå N. Childhood chronic illness: Prevalence, severity, and impact. Am J Public Health 1994;82:364 –71. 3. Gortmaker SL, Perrin JM, Weitzman M, et al. An unexpected success story: Transition to adulthood in youth with chronic physical health conditions. J Res Adolesc 1993;3:317–36. 4. Slap GB. Youth in transition to adult health care. In: McAnarney ER, Kreipe RE, Orr DP, Comerci GD, eds. Textbook of Adolescent Medicine. Philadelphia: WB Saunders, 1992:245– 8. 5. Society for Adolescent Medicine: Position Paper. Transition from child-centered to adult health-centered systems for ado-
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6.
7. 8.
9. 10. 11.
12.
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lescents with chronic conditions. J Adolesc Health 1993;14: 570 – 6. Johnson CP. Transition into adulthood. In: Capute AJ, Accardo PJ, eds. Developmental Disabilities in Infancy and Childhood, Vol. 1: Neurodevelopmental Diagnosis and Treatment. Baltimore, MD: Brooks Publishing, 1995. Court J. Outpatient-based transition services for youth. Pediatrician 1991;18:150 – 6. Coe L, Baker K. Growing up with a chronic condition: Transitions to young adulthood for the individual with cystic fibrosis. Holistic Nurse Practitioner 1993;8:8 –15. Blum RW. Transition to adult health care: Setting the stage. J Adolesc Health 1995;17:3–5. Agresti A. Categorical Data Analysis. New York: Wiley, 1990. Moving on . . . Transition From Child Centered to Adult Health Care for Youth with Disabilities. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Washington, DC, 1992:1–20. Stewart A, Greenfield S, Hays R, et al. Functional status and well being of patients with chronic conditions. JAMA 1989; 262:907–13.
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13. Cluff L. Chronic disease, function and the quality of care. J Chronic Dis 1981;34:299 –304. 14. Johnson C. Transition into adulthood. Pediatr Ann 1995;24: 268 –73. 15. Rosen D. Between two worlds: Bridging the cultures of child health and adult medicine. J Adolesc Health 1995;17:10 – 6. 16. Hardoff D, Chigier E. Developing community-based services for youth with disabilities. Pediatrician 1990;18:157– 62. 17. White P, Shear E. Transition/job readiness for adolescents with juvenile arthritis and other chronic illness. J Rheumatol 1992;19(Suppl 33):23–7. 18. Chamberlain M, Rooney C. Young adults with arthritis: Meeting their transitional needs. Br J Rheumatol 1996;35:84 –90. 19. Shidlow D, Fiel S. Life beyond pediatrics: Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am 1990;74:1113–20. 20. Blum R, Geber G. Chronically ill youth. In: McAnarney E, Kreipe R, Orr D, Comerci G, eds. Textbook of Adolescent Medicine. Philadelphia: WB Saunders, 1992:222– 8. 21. Blum R. Physicians assessment of deficiencies and desire for training in adolescent health care. J Med Educ 1987;62: 401– 6.
ORIGINAL ARTICLE
Trends in Transition From Pediatric to Adult Health Care Services for Young Adults With Chronic Conditions PETER SCAL, M.D., THEORA EVANS, M.S.W., M.P.H., Ph.D., SHELLEY BLOZIS, Ph.D., NANCY OKINOW, M.S.W., AND ROBERT BLUM, M.D., Ph.D.
Purpose: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling conditions that assist in transitioning from child- to adult-focused health services by (a) discrete types, (b) functional categories, and (c) problems and issues faced by these programs. Methods: Nominations for transition health services programs were solicited from 1025 organizational agencies at the local, state, regional, and national levels. Two solicitations yielded 277 nominees. After pilot testing, a survey of 163 forced responses and open-ended questions was mailed to each nominated transition health services program. A total of 122 programs returned completed surveys. Results: Program services were categorized as adolescent-focused (38%), condition-focused (36%), and specialty-specific programs (26%). Few programs were primary care-based. Categories were subsequently collapsed into two types: adolescent-focused and condition-focused. No significant differences were noted between adolescentand condition-focused programs regarding provision of
From the Department of Pediatrics (P.S.); the Division of General Pediatrics and Adolescent Health (T.E., R.B.); the Center for Children with Chronic Illness and Disability, Department of Pediatrics, (S.B.); and the National Center for Youth with Disabilities, Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota (N.O.). N.O. has since moved to Phoenix, Arizona, where she is the director of the Huntington Learning Center. S.B. has since moved to the Department of Psychology, University of Texas, Austin, Texas. Address reprint requests to: Theora Evans, M.S.W., M.P.H., Ph.D., Division of General Pediatrics and Adolescent Health, Department of Pediatrics, University of Minnesota, Box 721 Mayo, 420 Delaware St. SE, Minneapolis, MN 55455. Manuscript accepted February 6, 1998.
mental health services, vocational counseling, self-efficacy training, or health education. The primary barriers to transition health services were identified as funding and access to key staff, rather than family and adolescent resistance. Conclusion: In general, self-identified transition health care programs do not achieve the goal of collaborative, coordinated, and integrative services to adolescents with chronic or disabling conditions. Furthermore, the barriers to attaining the goal are the limitations of the health care system itself. © Society for Adolescent Medicine, 1999 KEY WORDS: Transition health services/programs Adult-focused care Anticipatory guidance Chronic physical conditions
Over 90% of children born today with chronic or disabling conditions will survive beyond their 20th birthday (1). By comparison, in 1973, the mean age of survival with cystic fibrosis was 7 years; today, in much of the industrialized world, it is more than 30 years. Twenty-five years ago, less than one-third of young people with spina bifida survived to the age of 20 years; today, over 80% will. We have seen comparable increases in the life span of children with most every condition. In 1994, Newacheck et al. (2) reported that 8.6 million young people ages 10 –17 years had a chronic condition (31.5% of the population), of whom 1.4 million experienced functional limitations. The work of Gortmaker et al. (3) suggested that many of these
© Society for Adolescent Medicine, 1999 Published by Elsevier Science Inc., 655 Avenue of the Americas, New York, NY 10010
1054-139X/99/$–see front matter PII S1054-1398(98)00127-X
260
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young people will reach adulthood without difficulty. For others, however, without assistance, an independent, functioning adulthood may not be achieved. For such youth to achieve autonomy, the provision of early collaborative, integrated, and coordinated educational, vocational, and health services should be available and accessible. These youth, as will their peers without chronic and disabling conditions, may have to cross multiple domains of transition concurrently. Transitions may include movement from home with family to independent or group living with peers; from pediatric, child-centered care to adult-oriented health services; and from school to work or unemployment. In the field of education, individualized transitional planning is a reality. The impetus for this transition mechanism was PL 101-476, Individuals With Disabilities Education Act (IDEA). Its goal is the preparation of youth for work. In health, transition planning is not universally in place. In 1992, Slap (4) defined transition in health as purposeful movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care. Blum et al. (5) articulated fundamental elements for transition health services: (a) professional and environmental or institutional support for the concept of transition of health care; (b) recognition and encouragement of the change in the process of decision-making and consent from the parent caretakers to the adolescent; (c) family support; (d) professional sensitivity to psychosocial issues of disability; (e) primary and preventive care in addition to medical management of the chronic illness or disability; and (f) health education (5). Thus, the range of services in transition health programs should not merely manage physical functioning, but should provide anticipatory guidance for social functioning as well. In health care, transition services are emerging. The literature (6 –9) addressing the transitional health services framework envisions uninterrupted, comprehensive, coordinated, integrated, and developmentally appropriate programs. The rationale for this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Based on the literature describing individual programs, it was hypothesized that: (a) most transition services will be subspecialty-based with strong mental health services but relatively fewer social, vocational, and other health care services; (b) transition services will follow definable patterns: subspecialty based (e.g., pulmonary medicine), disease-based
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(e.g., cystic fibrosis), primary care-based, and adolescent health-based; and (c) patient and family resistance will be identified as the primary barriers to effective transition planning (4 – 6). This study was undertaken to identify and characterize programs providing transition health services for adolescents and young adults in the United States.
Methods The first phase of the study was to identify programs across the country that incorporate one or more of the fundamental elements of transition health services as articulated in a position paper of the Society for Adolescent Medicine (5). An initial one-page survey was sent to the directors of state agencies for children with special health needs, state-level adolescent health coordinators; Society for Adolescent Medicine members with an identified interest in youth with chronic conditions; university-affiliated programs directors; disease-specific organizations (e.g., Spina Bifida Association, Cystic Fibrosis Foundation); state parent advocacy organizations; rehabilitation research and training center directors; and all nonduplicated members of the American Academy of Pediatrics, section on Children with Chronic Illness and Disability. A total of 1025 initial surveys were mailed with the intent of soliciting transition health service program nominations. Based on two waves of mailing four weeks apart, a response rate of 32% (n 5 331) was achieved, with 277 unique programs nominated. An in-depth follow-up questionnaire mailed to each nominated program was developed to identify the structure, functioning, problems, and issues faced by transition health services programs. The questionnaire, after pilot testing with 20 organizations, included 163 forced response and open-ended questions covering: (a) program/clinic goals and objectives, (b) descriptive information on both the available services and the health care team providing services, (c) funding issues, (d) barriers encountered in meeting objectives, and (e) types of program evaluation used. The 277 nominated programs were sent two waves of surveys four weeks apart. Completed questionnaires were received from 126 programs. Twenty-nine additional programs returned their blank questionnaires, indicating that health care transition was not a part of their clinical service; thus, a total of 155 surveys were returned, for an overall response
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rate of 46%. The 126 responses represent 122 programs offering transition services, three in various stages of development and one which no longer existed.
Data Analysis Responses to questionnaires were summarized by two-way contingency tables. Responses to questions were evaluated with respect to program type (adolescent-focused vs. condition-focused). While many response options were of the “yes/no” format, some had up to four response choices. Items characterized by more than two choice options were dichotomized by collapsing together particular response choices. Responses to items were then analyzed by comparing differences in response proportions conditional on program type. For each comparison, the log odds ratio (log uˆ ) is reported, and its asympototic standard error (ASE) and a 95% confidence interval (CI) for the odds ratio, u (10). CIs for the odds ratio containing the value 1.0 indicated no difference in the proportions with regard to program type. Condition-specific programs (n 5 60) were defined as those that had a primary focus on one condition. These included neurologic, 37%; cystic fibrosis, 13%; developmental disabilities, 12%; diabetes, 7%; arthritis, 5%; hemophilia, 5%; sickle cell, 5%; and congenital heart disease, 2%.
Results Program focus. Programs were categorized as providing services which were condition-specific (36%); specialty-specific, providing services for a range of related health conditions (26%); and adolescent health oriented, providing transition services for a range of chronic or disabling conditions (38%). Few programs were based on a primary care model. Further analysis made it difficult to distinguish condition- and specialty-specific services; most respondents used the two interchangeably. Thus, further analysis dichotomized programs as adolescent-focused and condition-focused. Planning and development. Transition health services were reported as often involving a multidisciplinary team, with the core team including a nurse (47%); pediatric subspecialist (44%), and a social service provider (41%). While a number of programs reported youth (15%) and family (22%) involvement, few actually involved either group in the planning or
261
Table 1. Priorities of Surveyed Transition Health Services Programs Priority
%
Adolescent and psychosocial well-being Medical issues of chronic condition Adolescent primary health concerns Family well-being Vocational needs of youth Advocating for adolescent needs Teaching self-advocacy skills
95 90 85 84 56 38 25
Note. n 5 126. Percentage represents service and advocacy goals for transition health services programs.
development of the clinic. Overall, consumer involvement, when it was sought at all, was limited primarily to satisfaction surveys. The adolescentfocused programs were nearly twice as likely to report adolescent involvement in program planning and development when compared to the conditionfocused programs (21% vs. 12%), although the difference was not statistically significant [log uˆ 5 1.99, ASE 5 0.50, 95% CI for u: (0.74, 5.32)]. Even so, only one in five adolescent-focused programs involved young people other than as patients. Conversely, condition-focused programs were more likely to involve pediatric subspecialists (56% v. 26%) and adult subspecialists (30% vs. 9%) compared with the adolescent-focused programs. These differences were significant for both pediatric subspecialists [log uˆ 5 1.33, ASE 5 0.41, 95% CI for u: (1.71, 8.35)] and for adult subspecialists [log uˆ 5 1.50, ASE 5 0.58, 95% CI for u: (1.45, 13.98)]. The overarching priorities of the transition health service programs surveyed are provided in Table 1. Condition-focused programs identified the medical issues of the chronic condition as a key goal significantly more often than did adolescent-focused programs [77% vs. 54%; log uˆ 5 0.97, ASE 5 .39, 95% CI for u: (1.22, 5.66)]. On the other hand, adolescentfocused programs showed a trend toward identifying adolescent health concerns as a central goal more frequently than condition-focused programs [48% vs. 32%; log uˆ 5 0.67, ASE 5 .38, 95% CI for u: (0.93, 4.09)]. Services provided. To identify the range of services offered in transition health service programs, respondents were asked to select services from the menu provided (Table 2). A total of 72% of programs reported offering case management services, usually provided by a social worker (45%) or a nurse (40%). The exact nature of case management was not specified. Condition-focused programs reported subspe-
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Table 2. Services Provided in Transition Health Services Programs Service
%
pediatric subspecialists (3%). Family and adolescent resistance to transition services were rarely reported by respondents as barriers to program development.
Clinical medical Mental health Mental health, available via referral or consultation Physical, mental health, and vocational (combination provided in some form) Case management
78 57 37 70
Discussion
72
Note. n 5 126. Percentage represents services currently provided by transition health programs.
cialist contact on every visit twice as often as adolescent-focused programs [56% vs. 25%; log uˆ 5 1.36, ASE 5 0.40, 95% CI for u: (1.76, 8.57)]. No significant differences were noted between adolescent- and condition-focused transition programs regarding provision of mental health services [60% vs. 63%; log uˆ 5 20.10, ASE 5 0.38, 95% CI for u: (0.43, 1.89)], career/vocational counseling [42% vs. 42%; log uˆ 5 0.03, ASE 5 0.37, 95% CI for u: (0.47, 2.02)], selfadvocacy training [38% vs. 41%; log uˆ 5 0.38, ASE 5 0.36, 95% CI for u: (0.72, 2.99)], or health education [77% vs. 76%; log uˆ 5 0.08, ASE 5 0.43, 95% CI for u: (0.46, 2.53)]. Funding. The survey sought to identify how transition health service programs were financially sustained beyond the reimbursement for direct clinical services. This question is particularly important in light of the changes occurring in health care financing for youth with special health care needs. Program support, when available, came from a variety of sources: For program development, a minority of programs were successful in obtaining such support, but where it existed, funding came from the federal government (33%), state government (33%), foundations (18%), or institutional funds (36%). Transition services were reimbursed primarily from fee-forservice billing (83%). In addition, clinical contracts with health maintenance organizations (HMOs) were important sources of support for 58% of patients. Federal grants (20%), state or local grants (31%), and private foundations (12%) were also important sources of funds for covering clinical service costs. Barriers. Respondents identified a number of barriers to developing transition programs. The primary concern centered on funding (41%). In addition, a major barrier for a number of programs included access to: adult primary care providers (34%), adult subspecialists (21%), pediatric primary care (6%) and
The dramatic increases in survival of young people with once life-threatening childhood health conditions requires changes in adult-oriented care. Youth with complex chronic health conditions require services and programs that support, advocate, and facilitate both their physical functioning and their resilience. Given increased survival of children with chronic conditions, the rising interest in transition issues has resulted in increased research, much of it editorial in nature (11–15), or clinic descriptions (16 –19). The present study is the first empirical survey of existing transition health services, documenting not only how they are organized and financed, but also the barriers they encounter. The literature suggests the primary goal of transition health services should be to maximize functioning and well-being (13). While such may be the goal, a position paper of the Society for Adolescent Medicine suggests that the focus has been on disease rather than on functional outcomes (5). The present study confirms that observation. Specifically, physician contact was the cornerstone of most every program, with nearly all programs reporting client– physician contact at almost every visit. While Slap (4) indicated one of the roles of successful transition health service programs is to prepare young people to negotiate the adult health care system independently, the present study indicates that only one in four programs surveyed even acknowledge this area as important. Likewise, while vocational counseling is critical for maximizing adult functioning (20), only slightly more than half of the programs surveyed saw this to be an important issue, and fewer than one in five provided for vocational counseling services. The present study hypothesized that most programs would be subspecialty-based. This proved to be true for those that clustered as condition-focused; however, for nearly two out of five programs, the focus was on adolescents themselves rather than their disease, and services were more broadly based. It was further hypothesized that, other than subspecialty medical care, mental health services would predominate as a cornerstone of transition health services. Clearly, such was the case. Nearly three of five programs reported consistent availability of mental health services within the program, and an
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additional third indicated such services were available upon referral. As with the medical services, provision of mental health counseling, and especially referral services, may reflect more of a problem orientation than one directed toward anticipatory guidance. Vocational counseling, advocacy skills training, and consumer education were significantly lower priorities. An additional hypothesis was that programs would cluster into four distinct groups: primary care, adolescent health, disease specific, and subspecialty. This hypothesis was based upon the Society for Adolescent Medicine position paper (5). While there was some indication that discrete types of services exist, careful analysis showed few differences among them. Specifically, few programs self-identified as primary care; those that were most inclusive saw themselves as adolescent health-focused. Likewise, while nearly equal percentages of respondents defined their service as disease- and subspecialty-specific, few differences were found between these two groups, and it became evident that respondents viewed these two categories as interchangeable. Thus, we are left with two functional categories: condition-focused and adolescent-focused. While certain generalizations can be made that distinguish these two groups (e.g., frequency of subspecialist contact), no differences were found among most services (e.g., mental health, vocational counseling, self-advocacy, or health education). Thus, it makes little sense to talk about service types. We also hypothesized that the providers would identify the most significant barriers to transition health service to be related to patient and family resistance. These issues have been recurrently identified in the literature as perceived barriers to developing effective transition health services (19). Interestingly, few respondents viewed young adult patients themselves or their parents as important barriers to developing transition health service programs. Rather, the lack of adult medical providers interested in transition health issues appeared to be the primary obstacle. This may reflect a primary focus on medical issues rather than the broader social, developmental, and familial concerns. Concurrently, the latter may confirm what has been reflected in the literature as a lack of training in transition health issues. In 1987, Blum (22) found in a national survey that only half of responding physicians reported being adequately trained in facilitating transition health care. Adult practitioners continue to have limited experience in managing what have historically been chronic conditions of child-
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hood despite the fact that over 90% of persons with these conditions will survive beyond their 20th birthday. The study is limited in a number of ways. Using a nomination technique might have precluded identification of some important programs. Likewise, only 46% of the nominated programs responded to the survey. Thus, there may be some data from nonresponding agencies that would have influenced the findings of the present study. However, the methodology used did allow for the identification of a large number of potential agencies for inclusion in the study, representing the largest sample of transition health services ever identified.
Conclusions The goal of developing a coherent system that allows for transition from pediatric to adult health care has yet to be achieved. The transition process is evident in health services when the following elements are in place: (a) professional and environmental, or institutional support; (b) decision-making and consent; (c) family support; and (d) professional sensitivity to the psychosocial issues of disability (5). The findings of the present study indicate that self-identified transition health care programs in general are not providing collaborative, coordinated, and integrative services to adolescents with chronic or disabling conditions. Furthermore, it appears that the barriers to attaining this goal are not the resistance of adolescents or their parents, but limitations of the health care system itself. This study was supported, in part, by the Center for Children with Chronic Illness and Disability, Grant H133B40019 of the National Institute on Disability and Rehabilitation Research; and Project Connect, Grant 1MCJ27R002-02 of the Maternal and Child Health Bureau, Health Services Research Administration.
References 1. Gortmaker SL, Sappenfield W. Chronic childhood disorders: Prevalence and impact. Pediatr Clin North Am 1984;31:3–18. 2. Newacheck PW, Hughes DC, Stoddard JJ, Halfonå N. Childhood chronic illness: Prevalence, severity, and impact. Am J Public Health 1994;82:364 –71. 3. Gortmaker SL, Perrin JM, Weitzman M, et al. An unexpected success story: Transition to adulthood in youth with chronic physical health conditions. J Res Adolesc 1993;3:317–36. 4. Slap GB. Youth in transition to adult health care. In: McAnarney ER, Kreipe RE, Orr DP, Comerci GD, eds. Textbook of Adolescent Medicine. Philadelphia: WB Saunders, 1992:245– 8. 5. Society for Adolescent Medicine: Position Paper. Transition from child-centered to adult health-centered systems for ado-
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6.
7. 8.
9. 10. 11.
12.
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lescents with chronic conditions. J Adolesc Health 1993;14: 570 – 6. Johnson CP. Transition into adulthood. In: Capute AJ, Accardo PJ, eds. Developmental Disabilities in Infancy and Childhood, Vol. 1: Neurodevelopmental Diagnosis and Treatment. Baltimore, MD: Brooks Publishing, 1995. Court J. Outpatient-based transition services for youth. Pediatrician 1991;18:150 – 6. Coe L, Baker K. Growing up with a chronic condition: Transitions to young adulthood for the individual with cystic fibrosis. Holistic Nurse Practitioner 1993;8:8 –15. Blum RW. Transition to adult health care: Setting the stage. J Adolesc Health 1995;17:3–5. Agresti A. Categorical Data Analysis. New York: Wiley, 1990. Moving on . . . Transition From Child Centered to Adult Health Care for Youth with Disabilities. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Washington, DC, 1992:1–20. Stewart A, Greenfield S, Hays R, et al. Functional status and well being of patients with chronic conditions. JAMA 1989; 262:907–13.
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13. Cluff L. Chronic disease, function and the quality of care. J Chronic Dis 1981;34:299 –304. 14. Johnson C. Transition into adulthood. Pediatr Ann 1995;24: 268 –73. 15. Rosen D. Between two worlds: Bridging the cultures of child health and adult medicine. J Adolesc Health 1995;17:10 – 6. 16. Hardoff D, Chigier E. Developing community-based services for youth with disabilities. Pediatrician 1990;18:157– 62. 17. White P, Shear E. Transition/job readiness for adolescents with juvenile arthritis and other chronic illness. J Rheumatol 1992;19(Suppl 33):23–7. 18. Chamberlain M, Rooney C. Young adults with arthritis: Meeting their transitional needs. Br J Rheumatol 1996;35:84 –90. 19. Shidlow D, Fiel S. Life beyond pediatrics: Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am 1990;74:1113–20. 20. Blum R, Geber G. Chronically ill youth. In: McAnarney E, Kreipe R, Orr D, Comerci G, eds. Textbook of Adolescent Medicine. Philadelphia: WB Saunders, 1992:222– 8. 21. Blum R. Physicians assessment of deficiencies and desire for training in adolescent health care. J Med Educ 1987;62: 401– 6.