Transition Care for Children With Special Health Care Needs

Abstract

WHAT'S KNOWN ON THIS SUBJECT: More children with special health care needs are surviving to adulthood and entering the adult health care system. Effective transition of care can promote continuity of developmental and age-appropriate care for these individuals. WHAT THIS STUDY ADDS:Existing studies provide modest transition care support. Methods for providing transition care warrant attention, and future research needs are wide ranging. Consistent and accepted measures of transition success are critical to establishing an adequate body of literature to affect practice. abstractBACKGROUND: Approximately 750 000 children in the United States with special health care needs will transition from pediatric to adult care annually. Fewer than half receive adequate transition care. METHODS:We had conversations with key informants representing clinicians who provide transition care, pediatric and adult providers of services for individuals with special health care needs, policy experts, and researchers; searched online sources for information about currently available programs and resources; and conducted a literature search to identify research on the effectiveness of transition programs. RESULTS:We identified 25 studies evaluating transition care programs. Most (n = 8) were conducted in populations with diabetes, with a smaller literature (n = 5) on transplant patients. We identified an additional 12 studies on a range of conditions, with no more than 2 studies on the same condition. Common components of care included use of a transition coordinator, a special clinic for young adults in transition, and provision of educational materials. CONCLUSIONS:The issue of how to provide transition care for children with special health care needs warrants further attention. Research needs are wide ranging, including both substantive and methodologic concerns. Although there is widespread agreement on the need for adequate transition programs, there is no accepted way to measure transition success. It will be essential to establish consistent goals to build an adequate body of literature to affect practice.

Management of Cardiac Involvement Associated With Neuromuscular Diseases: A Scientific Statement From the American Heart Association

“…351,352 Approximately 750 000 children with special healthcare needs in the United States transition to adult care annually, and <50% receive adequate support and the services needed to realize an effective transition. [353][354][355] Early development of staged and timely transition processes and programs geared toward education, and modifiable for individualized patient diagnosis and complicit concerns, is greatly needed. [356][357][358][359][360] It is recommended that education through accurate dissemination of information begin at an early stage in the patient healthcare process and directly involve caregivers, providers, support staff, and the patient.…”

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

“…Wellorchestrated transitions should help ensure that adolescents maintain continuity of care and are adequately prepared to selfmanage their conditions. 26,27 How the healthcare community should orchestrate transitions, however, is not clear. In a 2002 consensus statement, a working group from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians defined critical first steps to guide care and policy advocacy toward optimal transitions.…”

Health Care Use During Transfer to Adult Care Among Youth With Chronic Conditions

“…[1][2][3] Transfer of youth with chronic health conditions to adult care is often suboptimal due to factors such as emotional and cognitive developmental challenges, lack of individual and family-centered social supports, communication and coordination challenges between health care sectors, and a lack of appropriately trained adult health care providers. 4 Decline in health after transfer of care to adult health care providers is well described, possibly due to lapses in adherence, follow-up, and/or insurance coverage 5 ; however, most studies reporting this phenomenon have focused on single populations such as those with sickle cell disease, 6 diabetes mellitus, 7 or organ transplantation, 8,9 and relatively little is known about those with chronic mental health 10 and neurodevelopmental conditions.…”