title: Experiences and Outcomes of Transition from Pediatric to Adult Health Care Services for Young People with Congenital Heart Disease: A Systematic Review.
abstract: This review synthesizes the empirical literature on outcomes and experiences of transfer and transition from pediatric to adult care for young people with congenital heart disease. A systematic review of papers published between January 2001 and May 2013 that examined outcomes or experiences of transfer and transition among young people with congenital heart disease was conducted. Data were extracted by two independent reviewers with the outcomes data combined using narrative synthesis and the experiences data integrated using thematic synthesis. Thirteen papers were included in the review: six reported outcomes following transfer, six reported experiences of transfer and transition, and one reported both outcomes and experiences. The review data indicate that high proportions of young people were lost to follow-up or experienced long gaps in care after leaving pediatric cardiology. Factors that protected against loss to follow-up or lapse in care included: beliefs that specialized adult care was necessary; poorer health status; attendance at pediatric appointments without parents; and pediatric referral to an adult congenital heart disease center. Data on experiences highlighted that many young people were unconcerned about transition, but lacked knowledge about their condition and were insufficiently prepared for transfer. In terms of adult services, many young people desired continuity in the quality of care, youth-oriented facilities, a personalized approach, and for their parents to remain involved in their care, but in a secondary, supportive capacity. In conclusion, the high proportions of young people lost to follow-up highlight the need for formal transition programs, which ensure a planned and coordinated transfer. Patients with congenital heart disease need education throughout adolescence about the implications of their condition, the differences between pediatric and adult services, and self-care management.
authors: School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
authors: Emily
authors: E
authors: Heery
authors: School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
authors: Aisling M
authors: AM
authors: Sheehan
authors: Florence Nightingale Faculty of Nursing and Midwifery, King's College London, London, United Kingdom.
authors: Alison E
authors: AE
authors: While
authors: School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
authors: Imelda
authors: I
authors: Coyne
mesh_terms: D000293:Adolescent; D016497:Adolescent Health Services; D000328:Adult; D000367:Age Factors; D002309:Cardiology / Q000379:methods*; D002648:Child; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000503:physiopathology / Q000628:therapy*; D006801:Humans; D059012:Lost to Follow-Up; D010349:Patient Compliance; D010353:Patient Education as Topic; D010372:Pediatrics / Q000379:methods*; D017064:Process Assessment, Health Care; D013997:Time Factors; D060305:Transition to Adult Care; D016896:Treatment Outcome; D055815:Young Adult
keywords: Congenital Heart Disease; Loss to Follow-Up; Systematic Review; Transfer; Transition