Health care transition for youth with special health care needs. 2012

Sheila R Bloom, and Karen Kuhlthau, and Jeanne Van Cleave, and Alixandra A Knapp, and Paul Newacheck, and James M Perrin
Center for Child and Adolescent Health Policy, Department of Pediatrics, MassGeneral Hospital for Children, Boston, Massachusetts, USA. sbloom1@partners.org

OBJECTIVE Youth with special health care needs (YSHCN) increasingly live into adulthood, and approximately 500,000 U.S. youth transition from pediatric to adult health care systems annually. Through a systematic literature review, we sought to (1) determine adult outcomes for YSHCN who have no special transition interventions and (2) identify evidence for strategies that lead to better outcomes, in particular, access to adult health care. METHODS We searched the medical, nursing, psychology, and social science literature and reviewed selected articles' reference lists. Transition experts also recommended relevant articles. Search criteria included health conditions, transition-related activities, and health care and related outcomes. We selected English-language articles published from 1986 to 2010, with an abstract, description of transition-related interventions (objective 2), and posttransition outcomes. Investigators abstracted study design, population, sample size, description of intervention, data collection methods, and findings. RESULTS The search yielded 3,370 articles, of which 15 met study criteria. Although many YSHCN appear to make the transition to adult health providers successfully, some experience serious gaps in outcomes; those with more complex conditions or with conditions affecting the nervous system appear to have less good transitions. Some evidence supports introducing YSHCN to adult providers before leaving the pediatric system; one study supports using care coordinators to improve outcomes. CONCLUSIONS Evidence regarding programs to facilitate transition for YSHCN is inconclusive. Weak evidence suggests that meeting adult providers before transfer may facilitate posttransition access to care. We recommend additional studies with strong research designs to guide best practice in preparing YSHCN for adulthood.

UI MeSH Term Description Entries
D002908 Chronic Disease Diseases which have one or more of the following characteristics: they are permanent, leave residual disability, are caused by nonreversible pathological alteration, require special training of the patient for rehabilitation, or may be expected to require a long period of supervision, observation, or care (Dictionary of Health Services Management, 2d ed). For epidemiological studies chronic disease often includes HEART DISEASES; STROKE; CANCER; and diabetes (DIABETES MELLITUS, TYPE 2). Chronic Condition,Chronic Illness,Chronically Ill,Chronic Conditions,Chronic Diseases,Chronic Illnesses,Condition, Chronic,Disease, Chronic,Illness, Chronic
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000293 Adolescent A person 13 to 18 years of age. Adolescence,Youth,Adolescents,Adolescents, Female,Adolescents, Male,Teenagers,Teens,Adolescent, Female,Adolescent, Male,Female Adolescent,Female Adolescents,Male Adolescent,Male Adolescents,Teen,Teenager,Youths
D055815 Young Adult A person between 19 and 24 years of age. Adult, Young,Adults, Young,Young Adults
D060305 Transition to Adult Care Transfer from pediatric to adult care. Pediatric Transition To Adult Care,Transfer from Pediatric to Adult Care,Transfer to Adult Care,Transferring to Adult Care

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