Workshop on Disability in America A New Look: Summary and Background Papers (2006) / Chapter Skim
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Appendix I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives--John Reiss and Robert Gibson
Appendix I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives--John Reiss and Robert Gibson
Pages 166-184
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From page 166... ...
. 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
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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 adultoriented health care, the transfer itself, and the establishment of the young adult in the adult health care system.
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. 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.
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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)
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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.
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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 selfcare and other medical tasks and responsibilities. The transfer to adult care has potential psychosocial as well as health consequences.
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. 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.
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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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. 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)
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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)
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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.
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This information is critical for successful health care transition and provides the common knowledge base for collaboration among health care professionals.
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; 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.
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From page 179... ...
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?
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• 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.
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American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transition for young adults with special health care needs.
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Forbes A, While A, Ullman R, Lewis S, Mathes L, Griffiths P A Multi-Method Review to Identify Components of Practice Which May Promote Continuity in the Transition from Child to Adult Care for Young People with Chronic Illness or Disability.
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Health Care Transition Workbooks Series. Gainesville: Institute for Child Health Policy, University of Florida, 2005.
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Viner R Transition from pediatric to adult care.
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