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Workshop on Disability in america A new look: Summary and background papers I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives John Reiss and Robert Gibson* In the United States, almost 9.4 million children and youth have special health care needs (Centers for Disease Control and Prevention, National Center for Health Statistics, 2000), and approximately 500,000 turn 18 years old annually (Newacheck and Taylor, 1992). The large and growing number of young adults with special health care needs and disabilities is a result of medical advances that have been made over the past 25 years. Today, many children who once would have died from severe congenital disorders and other serious medical conditions survive into adulthood (Blum, 1995; Gortmaker et al., 1993). More than 15 years ago, in anticipation of the challenges that these young people might face in accessing health care and the demands they would place on the pediatric and adult health care systems, Surgeon General C. Everett Koop convened a conference entitled Growing Up and Getting Medical Care: Youth with Special Health Care Needs (Magrab and Miller, 1989). The conference drew much needed attention to this emerging issue and created a national agenda for developing a seamless health care system that would allow youth to easily move from child-centered (pediatric) to adult-oriented health care (Blum, 2002; Reiss, 1999). Because the * John Reiss, Ph.D. Associate Professor of Pediatrics and, Institute for Child Health Policy, University of Florida, Gainesville. Robert Gibson, Ph.D., MSOTR/L, Research Associate, Institute for Child Health Policy, University of Florida, Gainesville. The analyses and views presented in this workshop paper are those of the author and not necessarily those of the Institute of Medicine Committee on Disability in America: A New Look.
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Workshop on Disability in america A new look: Summary and background papers transition to adulthood represents a critical turning point in the life course, suboptimal transition experiences may affect the ability of people with childhood onset chronic conditions to participate in society and live fulfilling lives as adults (Halfon and Hochstein, 2002). The last decade and a half has seen an ever-expanding number of policy and consensus statements, practice guidelines, position papers, conference reports, calls to action, editorials, program descriptions, and small research studies that address various aspects of health care transitions for young people (Reiss and Gibson, 2002). In 2002, the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians-American Society of Internal Medicine (ACP-ASIM) released a consensus statement (American Academy of Pediatrics et al., 2002) that sets out six steps to ensure that all young people with special health care needs are provided with the support that they need to transition to adult-oriented medical care. (See Box I-1 below). To implement these and other similar recommendations will require changes in professional education, clinical practice, organizational procedures and structures, public policies, and research priorities (Scal, 2002; Blum, 2002; Reiss and Gibson, 2002; Reiss et al., 2005; Lotstein et al., 2005). For the purposes of this paper, health care transfer refers to the point in time when an individual changes from one primary or specialty care provider to another. This paper focuses on one important example, the transfer from pediatric to adult care. Health care transition refers to a planned process that for youth includes the preparation for transfer from pediatric to adult-oriented health care, the transfer itself, and the establishment of the young adult in the adult health care system. Child-centered care and pediatric care refer to primary and specialty health care that is provided to individuals under the age of 18 years by pediatricians, family physicians, pediatric nurse practitioners, and other child health care professionals. Such care is characterized by attention to processes of physical, mental, and emotional development that continue from infancy through adolescence and includes involvement by parents, who oversee and provide much care to children in the home. During this period, parents have the legal responsibility for decisions about a child’s care, although young people generally become more involved in decision making as they mature. Adult-oriented health care refers to health care that is provided to individuals over the age of 18 and that places greater emphasis on personal responsibility and patient autonomy. HEALTH CARE TRANSITION VIEWED AS A DEVELOPMENTAL PROCESS As noted by Rosen (2004), health care transition occurs “contemporaneously with the dramatic physical, cognitive, psychological and social
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Workshop on Disability in america A new look: Summary and background papers development of adolescence” (p. 126) and within the broader context of the developmental tasks associated with the transition from adolescence to adulthood (i.e., increased independence, legal responsibility, work, financial self-sufficiency, and the formation of adult partnerships and new families). For young adults with disabilities or special health care needs, health care transition is a “dynamic lifelong process that seeks to meet their individual needs as they move from childhood to adulthood. The goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood” (American Academy of Pediatrics et al., 2002, p.1304). Furthermore, transition involves a “reorientation of clinical relations to mirror the young person’s increasing maturity and emerging adulthood” (American Academy of Pediatrics et al., 2002, pp.1304-5). Our research on the real-life experience of health care transitions revealed that for the youth and families that were most successful in transition, the shift occurred as a developmental process that progressed through three stages. These stages are: envisioning a future, age of responsibility, and age of transition (Reiss et al., 2005). The first stage, envisioning a future, starts at the time of diagnosis and focuses on the establishment of a future-oriented perspective. Questions about future education, employment options, independent living in the community, and health care needs should help to prompt families and providers to formulate long-term goals and initiate activities that promote the child’s future independence. The second stage, the age of responsibility (ages 6 to 14 years), centers on the young person mastering and independently carrying out developmentally appropriate and age-appropriate tasks. These tasks include such routine activities as learning to dress oneself and managing personal hygiene, as well as specific health care tasks, such as taking medications independently, learning about one’s illness or disability and communicating with health care providers. The first two stages lay the foundation for the broad range of the transition-specific activities that occur during the final stage, the age of transition. This stage is divided into two periods, adolescence (ages 15 to 17 years) and young adulthood (ages 18 to 25 years), the dividing point being the legal age of adulthood (age 18 years in the United States). It is during the stage of transition that the young person develops and refines the knowledge and skills needed to interact with the adult-oriented health care system independently and take the lead role in medical decision making. New adult-oriented providers are identified and selected and the challenge of maintaining health insurance coverage is addressed.
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Workshop on Disability in america A new look: Summary and background papers PROVIDER POLICIES AND PRACTICES In the United States, children receive child-oriented health care from pediatricians, family physicians, pediatric nurse practitioners, or other child health care professionals. Transfers from pediatric to adult-oriented care typically appear to be based on a young person’s age rather than his or her readiness or ability to negotiate the adult health care system (Reiss et al., 2005). Many pediatric physicians, especially those who provide primary care, have a policy to discharge their patients when they finish college or reach a certain age, which is typically by the age of 21 years (American Academy of Pediatrics, Council on Child Health, 1972; see also commentary by Litt, 1998. The 1972 statement remains current AAP policy [personal communication, Stephanie Mucha Skipper, M.P.H., Manager, Council on Children with Disabilities, AAP]). In addition, some professional medical associations have guidelines on age as part of licensing or specific accreditations. For example, the national professional guidelines for pediatric nurse practitioners restrict their practice to individuals aged 21 years and under, except under certain circumstances (National Association of Pediatric Nurse Practitioners, 2004). Children’s health services and agencies may have maximum age policies defined in their charters, by-laws, or other corporate operating procedures. Examples include the 18-21 upper age limit for State Title V CHSCN Programs (Reiss and Lamar, 2003) and the 18 year old age limit for Shriners Hospitals (Ben Ali Shriners, 2005). Hospitals that serve both children and adults typically have policies that require inpatients over a certain age (for example, age 18 years) to be cared for on floors for adults rather than in the pediatric section of the hospital (Personal communication, Terrance Flotte, MD, Chairman Department of Pediatrics, University of Florida, November 8, 2005). These inpatient policies appear to be related to a number of factors, including staff training and expertise, the availability of size- and age-appropriate medical equipment and technology, the perceived appropriateness of the care environment, and tradition. An abrupt transfer out of pediatric care can also be prompted by an adolescent’s display of adult behaviors. More generally, pediatric providers may hesitate to treat adolescents and young adults who are sexually active, pregnant, abusing illegal substances, acting out or challenging authority, or adjudicated to the juvenile justice system (Reiss et al. 2005, Rosen, 2004). The primary concern about using a young person’s age or behavior as a criterion for transfer to adult care is that transfers may be implemented without a process for determining whether the individual is prepared for the world of adult-oriented medicine.
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Workshop on Disability in america A new look: Summary and background papers BENEFITS AND CHALLENGES OF THE TRANSFER FROM PEDIATRIC TO ADULT CARE How young people move from pediatric to adult-oriented health care is not well documented or understood. For many healthy young people, a typical sequence appears to be (1) a period during which a young person stops seeing child-oriented providers, (2) a period during which the individual is not well connected to the health care system, and (3) a time in middle age when emerging acute and chronic health care problems such hypertension prompt the reestablishment of a relationship with one or more health care professionals. This pattern may be most characteristic of healthy young men, who may only occasionally need treatment for an injury or acute illness. Young adult women with needs for gynecological and obstetric care have more motivation to establish a relationship with a health care professional. Although data from the National Health Interview Survey show a sharp drop after age 18 for both males and females in the proportion of people who have a usual place to go for health care, the drop is much greater for males than females—from approximately 95 percent for both groups in the under-18-age group to approximately 65 percent for males and 80 percent for females aged 18 to 24 (Centers for Disease Control and Prevention, 2004). Overall, our sense is that for many young people the move from pediatric to adult-oriented care is less a transition (a planned purposeful process) than a series of discontinuous events. Although such an unplanned process is not ideal, it may not substantially interfere with the progress that most young adults make in addressing the tasks of young adulthood, such as completing education and training, getting a job, moving toward financial self-sufficiency, living independently, starting a family of their own, and establishing their place in adult society (Havighurst, 1972; Elliot and Feldman, 1990; Carnegie Council on Adolescent Development, 1995). In contrast, young adults with disabilities and special health care needs do not have the option of dropping out of the health care system for an extended period of time. Doing so can have serious, even life-threatening health consequences. Furthermore, for many of these young people, progress toward adult roles and responsibilities depends, in part, on access the health care that helps them to be as healthy and as functional as possible (Viner, 1999). The move from pediatric to adult-oriented health care presents both potential benefits and challenges or risks for young adults with disabilities or special health care needs. The potential benefits include receipt of age-appropriate preventive and primary care that supports adult roles and functioning and that includes screening for and treat-
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Workshop on Disability in america A new look: Summary and background papers ment of common adult health problems, for example, cholesterol and hypertension screening and counseling about exercise and weight; increased attention to sexuality, fertility, and reproductive health issues; promotion of a more active role for the young adult in learning about, managing, and making decisions about their health and health care; and improved access to adult inpatient services and to subspecialists trained to treat adults. Potential challenges associated with the transition of young adults to adult-oriented providers also exist. They include difficulty finding primary and specialty care providers who have experience with and current knowledge of certain pediatric-onset conditions and who are interested in treating young adults with these conditions; loss of access to pediatric professionals and providers who have unique knowledge about the pediatric onset conditions, the history of a disabling condition for a particular young person, and the personal and family circumstances of that individual, including the medical care and other support provided by family members; changes in a therapeutic regimen that may, if not carefully presented and monitored, cause confusion and compromise a young adult’s adherence to the regimen; and limited preparation of young adults to assume, as appropriate, the adult patient role in making decisions and independently carrying out self-care and other medical tasks and responsibilities. The transfer to adult care has potential psychosocial as well as health consequences. Potential psychosocial benefits include the promotion of age-appropriate social and emotional development, greater self-reliance, a positive self-image, and an increased sense of competence. The transfer may also broaden the young person’s system of interpersonal and social supports beyond those developed in childhood and adolescence. At the same time, a transfer to adult care may present psychosocial challenges, including the loss of familiar formal and informal social supports provided by the pediatric health system. Young people may also be overwhelmed by their new adult responsibilities of medical decision making, self-care, and self-advocacy and the challenge of navigating the unfamiliar adult health care system. Some young people, especially those for whom transfer is abrupt, may experience the transfer to adult-oriented care as a punishment or rejection. For people with disabilities that are associated with shortened life expectancy, the transfer to adult care may bring an
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Workshop on Disability in america A new look: Summary and background papers increased awareness of mortality and increased anxiety, including anxiety about age-related exacerbations and complications of their condition. Not only patients but also health care professionals may experience challenges with the transfer of older pediatric patients. These challenges include having to terminate long-term, emotionally significant relationships with young adults and their families (Sawyer et al., 1997). Some pediatricians do not trust that their young adult patients will receive the necessary care and guidance in the adult health care system that they have received from the pediatric health care system (Schidlow and Fiel, 1990; Reiss et al., 2005). Sometimes, pediatricians may be dismayed to find prior pediatric patients returning to see them as adults whose health has deteriorated after they have unsuccessfully sought care from the adult-oriented health care system (Reiss et al., 2005). For clinical researchers involved in long-term research on pediatric onset conditions, continued follow up can become even more difficult when their patients move from pediatric to adult care. For adult care providers, the timely transfer of key medical information can be a challenge (Coleman and Boult, 2003; Rubin, 2003), not unique to this transition but nonetheless a significant concern. Some young adults with complex conditions come to their new adult providers with little or no written information about their history or current course of treatment. Others come with multiple volumes of documentation that may date back to the patient’s initial stay in a neonatal care unit. In either case, this presents the new providers with very time-consuming tasks of collecting or assessing information, tasks for which there is little or no specific reimbursement by health plans. FORCES AND FACTORS THAT AFFECT TRANSFERS AND TRANSITIONS In addition to the challenges for patients, families, and providers that are associated with the transfer to adult-oriented health care, a number of systems-level forces and factors impede the smooth transfer from pediatric to adult care systems. Two—health care funding and professional education—are discussed here. The policies and procedures of health care professionals and facilities were described earlier. Funding of Health Care Services Two aspects of health care funding may complicate smooth transfers from pediatric to adult providers. The first of these involves the lower rates of insurance for young adults with special health care needs compared to other young adults. Young adults with disabilities and chronic conditions have a relatively higher rate of being uninsured than younger or older
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Workshop on Disability in america A new look: Summary and background papers individuals (Callahan and Cooper, 2004; Collins et al., 2004; Fishman, 2001; White, 2002). Employment-based family health insurance plans have age limits (generally between the ages of 19 and 23 years), after which coverage for children is no longer offered (Collins et al., 2004). Young adults with special health care needs who are insured are less likely than their insured peers to have employment-based insurance because the unemployment and underemployment rates for that population are so high (White, 2002; Fishman, 2001). They are more likely than their peers to be insured through state Medicaid programs (McManus et al., 1991). Medicaid typically provides a significantly lower rate of payment to providers than employment-based coverage or Medicare, which may discourage physicians from accepting Medicaid patients (Kaiser, 2002; Yudowsky et al., 2000). Because the SSI disability criteria for children (age 0 to 17) are less restrictive than the criteria for adults, youth who are insured through Medicaid because they qualify as disabled under the Supplemental Security Income (SSI) Program may lose both SSI and Medicaid when they turn 18 (Reiss, Wallace and McPherson, 2002; Loprest and Wittenberg, 2005). The second funding issue involves the differences in the scope of health plan coverage for children and adolescents compared to that for adults, especially in public programs. Medicaid, the State Children’s Health Insurance Program, and the state Title V Children with Special Health Care Needs Screener Program offer benefits to children that are not equally available to adults in need. For example, Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program, which covers recipients under the age of 21, requires that specified services be provided to children even if a state’s Medicaid program does not cover the service for other beneficiaries (Centers for Medicare and Medicaid Services, 2005). The EPSDT program also requires state programs to provide information to families and to help them use available services appropriately. Unfortunately, the scope of this coverage as written is not matched by the actual delivery of services. The U.S. General Accounting Office has reported that Medicaid-eligible children often do not receive critical EPSDT services (General Accounting Office, 2001). Notwithstanding this shortfall, many children with special health care needs will experience a loss of financial access to certain services when they become adults, even if they continue to be covered by Medicaid. This can complicate the transition to adult care and frustrate patients, families, and providers. Education of Pediatric and Adult Health Care Professionals Some studies suggested that factors that affect the transition from pediatric to adult-oriented care are associated with the differences between the training of pediatricians and adult physicians (Rosen, 1995, 2004; Watson,
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Workshop on Disability in america A new look: Summary and background papers 2005; McDonagh, 2005). Most general and specialty medical care physicians receive the majority of their clinical training in residencies and fellowships that address the diseases and health care needs either of children (those under age 21 years) or of adults, but rarely both. One exception to this pattern of age segregation is Med-Peds, in which physicians receive 2 years of residency training in pediatrics and 2 years of residency training in internal medicine (Lannon et al., 1999; American Academy of Pediatrics, undated). Another exception is adolescent medicine, in which physicians trained in pediatrics or internal medicine receive additional training in the care of adolescents and young adults (American Board of Internal Medicine, 2005; American Board of Pediatrics, 2005). However, these two specialty areas of training are relatively new, and the number of physicians who have completed Med-Peds or adolescent medicine programs is small and geographic distribution is uneven (Lannon et al., 1999). Family physicians are prepared to provide primary care from birth through old age. Nonetheless, they receive very limited training in the complex pediatric onset conditions for the growing number of patients with these conditions who in earlier times would not have reached adulthood or middle age (Blum, 1995). Beyond the initial training of physicians, medical journals, professional organizations, research, and conferences tend to be organized into distinct age-related realms. This separation limits the formal and informal connections between pediatric and adult-oriented primary and specialty care providers and also reinforces the suggestion that pediatric and adult-oriented medicine constitute two separate subcultures of biomedicine (Cassell, 2004; Good, 1994; Rosen, 1995; Reiss et al., 2005). As noted by Dr. Christine Cassell (President, American Board of Internal Medicine), “as health professionals, we do not often think of culture as affecting our actions and attitudes . . . Culture is a term we apply freely to explain the behavior and attitudes of people who think and act differently from ourselves” (Cassell, 2004, p. xv). Although empirical data regarding cultural differences between pediatrics and adult-oriented medicine are limited, we believe it is important to recognize the power of medical cultures and their relevance to health care transitions involving the move of children with special health care needs from one medical subculture (pediatrics) to another (adult-oriented medicine). IMPROVING THE TRANSFER PROCESS As noted earlier, the AAP, AAFP, and ACP-ASIM have developed a consensus statement on the health care transitions for children with special health care needs. An excerpt from that statement appears in Box I-1. It recognizes that much remains to be done to improve health care transitions and outcomes for young adults with special health care needs.
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Workshop on Disability in america A new look: Summary and background papers The consensus statement recommends the creation of an up-to-date detailed written transition plan for children with special health care needs by the time they reach 14 years of age. At a minimum, this plan should include what services need to be provided, who will provide them, and how they will be financed. The importance of developing a transition plan in early adolescence is also reflected in the Individuals with Disabilities Education Act (2004, PL 108-446), which mandates the development of a transition plan for all students who receive special education services by age 16 years. A variety of instruments for transition planning currently exist (see National Center of Medical Home Initiative for CSHCN, 2005 for a listing). These instruments have both strengths and weaknesses. A review of these transition planning instruments as part of the development of a comprehensive transition planning tool for youth and their families (Reiss and Gibson, 2005) suggest that transition plans should address the following eight areas: (1) the youth’s long-term goals; (2) the youth’s knowledge about his or her condition or disability; (3) the youth’s health behaviors; (4) tasks related to taking medication, conducting clinical tests, and using equipment; (5) the youth’s behaviors related to health care visits; (6) tasks related to transfer to adult providers (e.g., locating and selecting adult providers and transferring medical information); (7) tasks related to other aspects of adulthood (e.g., education, work, and independent living); and (8) skills for accessing care through the adult-oriented health care system (e.g. making appointments, maintaining and using health insurance, and providing informed consent). A strategy that is similar in many respects to that outlined in the consensus statement has been suggested by Forbes and colleagues (2001) in a report for the National Coordinating Centre for National Health Service of Great Britain on continuity of care during the transfer from pediatric to adult medicine. The authors of the report reviewed more than 120 publications that addressed continuity of care for youth with disabilities and special health care needs, identified practices that address continuity, and assessed the relative merits evidence for those practices. The report proposed that strategies can be classified into general approaches or models. We have simplified and relabeled these, for the purposes of this review, as: 1) youth and family education and preparation; 2) practitioner-focused clinical education and training; and 3) systems development. Youth and Family Education and Preparation As discussed by Forbes and colleagues, youth- and family-focused interventions address the logistical, developmental, and emotional challenges of the transfer to adult-oriented care. These interventions are designed to
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Workshop on Disability in america A new look: Summary and background papers Box I-1 Health Care Transitions for Young Adults with Special Health Care Needs This policy statement represents a consensus on the critical first steps that the medical profession needs to take to realize the vision of a family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent health care system that is as developmentally appropriate as it is technically sophisticated. The goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood…. The goals of this policy statement are to ensure that by the year 2010 all physicians who provide primary or subspecialty care to young people with special health care needs 1) understand the rationale for transition from child-oriented to adult-oriented health care; 2) have the knowledge and skills to facilitate that process; and 3) know if, how, and when transfer of care is indicated. Ensure that all young people with special health care needs have an identified health care professional who attends to the unique challenges of transition and assumes responsibility for current health care, care coordination, and future health care planning. This responsibility is executed in partnership with other child and adult health care professionals, the young person, and his or her family. It is intended to ensure that as transitions occur, all young people have uninterrupted, comprehensive, and accessible care within their community. Identify the core knowledge and skills required to provide developmentally appropriate health care transition services to young people with special health care needs and make them part of training and certification requirements for primary care residents and physicians in practice. help youth acquire the knowledge and skills that they need to interact independently and effectively with the adult health care system and to support families through this process. Activities associated with this type of intervention include individualized needs assessment; the use of checklists and health care transition planning materials and support; individualized or group training on self-care, communication, medical decision making, and life skills; peer support; and the education of parents to promote their child’s independence. Practitioner-Focused Clinical Education and Training Interventions Practitioner-focused interventions are designed to ensure that the clinical expertise regarding childhood-onset disabilities and special health care needs found in the pediatric system continues to be available to the young
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Workshop on Disability in america A new look: Summary and background papers Prepare and maintain an up-to-date medical summary that is portable and accessible. This information is critical for successful health care transition and provides the common knowledge base for collaboration among health care professionals. Create a written health care transition plan by age 14 together with the young person and family. At a minimum, this plan should include what services need to be provided, who will provide them, and how they will be financed. This plan should be reviewed and updated annually and whenever there is a transfer of care. Apply the same guidelines for primary and preventive care for all adolescents and young adults, including those with special health care needs, recognizing that young people with special health care needs may require more resources and services than do other young people to optimize their health. Examples of such guidelines include the American Medical Association’s Guidelines for Adolescent Preventive Services (GAPS), the National Center for Education in Maternal and Child Health’s Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, and the US Public Health Service’s Guidelines to Clinical Preventive Services. Ensure affordable, continuous health insurance coverage for all young people with special health care needs throughout adolescence and adulthood. This insurance should cover appropriate compensation for 1) health care transition planning for all young people with special health care needs, and 2) care coordination for those who have complex medical conditions. SOURCE: American Academy of Pediatrics et al., 2002. See also, American Medical Association, 2000; Green and Palfrey, 2000; and U.S. Preventive Services Task Force, 1996. Permission to use requested from Pediatrics. adult once he or she transfers to adult providers. These interventions include the provision of clinical training to adult primary and specialty care providers who may not have experience in treating childhood-onset conditions. They also include the availability of pediatric providers to provide ongoing consultation and technical assistance to adult providers and the implementation of shared clinics. In shared clinics, pediatric and adult providers work together over a period of time to manage the care of patients and learn from each other regarding the development and implementation of developmentally appropriate health care for young adults. Systems Development Systems-level actions focus on the organizational issues that arise because pediatrics and adult-oriented medicine tend to function as separate and distinct health care delivery systems. Actions include the promotion of
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Workshop on Disability in america A new look: Summary and background papers good communication; the sharing of patient-specific information across pediatric and adult programs and services; and the modification of standard practices, procedures, and staffing patterns to better meet the changing needs of youth as they move through the transition process. Changes of these sorts also involve the linking of the health care system with the educational system and the other institutions and organizations that have served a child with special needs. Strategies for improving communication and information exchange include regular meetings among pediatric and adult staff to share patient-specific information before the transfer of care, the development of a model medical summary form, and care coordination (which ensures that appointments with adult providers are scheduled and kept). Modifications to standard practices include implementation of transition clinics; the provision of more flexible services (such as longer medical visits, visits after traditional office hours, and the provision of services in schools and other nontraditional settings); and the addition of staff whose time is dedicated to providing training or developmentally appropriate care and psychosocial support. On the basis of their review, Forbes and colleagues concluded that the quantity and the quality of the empirical evidence do not allow determination of the absolute or the relative impact that the various family-focused, professional-focused, and organization-focused health care transition interventions and related activities have on the transfer of care. This lack of evidence on impact is related to a number of methodological problems, including small sample sizes, the lack of control groups, and measurement problems. Additionally, most of the real-world health care transition programs that have been studied have included activities that fall under two or three of the intervention categories discussed above (Betz, 2004). This blending of intervention methods, along with the confounding of patient-family factors, such as disease severity, health status, cognitive ability, family functioning, and psychosocial status, contribute to the difficulty of determining what health care transition interventions are helpful to whom, when, and under what circumstances. There is general agreement about the needs and directions for health care transition in the Consensus Statement, the work of Forbes and colleagues (2001), and the suggestions of Rosen, (2004). As Rosen (2004) states, although the empirical evidence is not conclusive, the body of published work on health care transition does provide practical guidance and that there are now “some fundamental principles of transition that have achieved nearly universal endorsement … [which] provide a framework” (p. 126) for the further development and study of health care transition services for young people with special health care needs. These principles and promising approaches include the following: (1) transition should occur within a developmental context; (2) the timing of the transfer from
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Workshop on Disability in america A new look: Summary and background papers pediatric to adult-oriented health care should be flexible; (3) self-care is a critical competency for youth with special needs; (4) the adequate exchange of information between the pediatric and the adult physicians is a critical component of the transition process; (5) successful transition requires coordination; (6) transition should include joint visits; (7) transition planning should include the family; (8) young adults require adult-oriented primary and preventive care; and (9) adequate infrastructure is necessary to support transition (Rosen, 2004). Further research is clearly necessary to assess what practices best prepare young people and their families for transition. Research can also help guide changes in medical education, policies and procedures and improvements in health systems and community infrastructure that will better assist young adults with disabilities and special health care needs to work and live independently in their communities. DIRECTIONS FOR FUTURE RESEARCH Based on our work and the work of others cited in this appendix, we see several areas for transition research. The lists of research topics below follow the categories set out by Forbes and colleagues (2001). First are research questions that are relevant to the needs of youth and family members in transition. These include What information, training, and other support are most effective in helping families to anticipate and prepare for health care transition? At what age should transition preparation begin and what age or age range constitutes the best target date for transfer to adult-oriented medical systems? What characteristics of youth and families predict successful transition outcomes? What are the social and psychological impacts on the young person of transfer to adult-oriented care? A second category of research needs focuses on the preparation of health care providers to facilitate and promote transition. Questions include What research and professional activities will best alert the adult-oriented medical community of the growing need of providers for young adults with disabilities and special health care needs? What knowledge and skills are necessary to address the continuing developmental as well as medical needs of young adults with disabilities and special health care needs? What are the best methods for getting ad-
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Workshop on Disability in america A new look: Summary and background papers equate numbers of adult-oriented providers acquainted with this knowledge and these skills? What supports such as a standardized transition notes or joint medical visits are most effective in getting transition information conveyed among health care providers? What else can be done to establish better communication between pediatric and adult-oriented providers to support the transition process? A third area for research involves knowledge to guide system changes that will support successful health care transitions. Questions include What characteristics of health care systems predict successful transition outcomes? What are the medical and health care experiences of healthy adolescents and young adults (ages 16 to 26) as well as those with disabilities as they transition to adult-oriented providers? What type of care do they access, from whom do they receive their care and how is this care paid for? What are the costs and the benefits of health care transition services and support (including long-term costs)? What models and strategies are used by professionals, providers, and others to transition youth with disabilities and special health care needs to the adult health care system? How do they affect outcomes? What are the short-term and the long-term health consequences of aging out of the pediatric health care system? Some of these suggestions will require new information sources and research strategies. They will require long-term studies to track health behaviors and encounters through adolescence into adulthood. CONCLUSION About 9.4 million children and youth in the United States have special health care needs, and more than 90 percent of these children and youth will live to see their 21st birthday. As young adults, these individuals need age-appropriate medical care that will help them be healthy, active, contributing members of society. However, these young adults face a broad range of challenges as they graduate from the pediatric system and turn to the adult-oriented system for the health care. These challenges are the product of a variety of forces and factors, both individual and systemic. Although the available evidence does not provide us with a surefire fix for these problems, it does point out steps that can be taken to make progress. These steps involve the implementation of promising health care transition practices and principles more broadly, the evaluation of the effectiveness of
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