Transition to adult health care for adolescents and young adults with congenital heart disease: Perspectives of the patient, parent and health care provider

Canadian Journal of Cardiology

Volumn 25, Issue 9, 2009, Pages S317-S322

  Clarizia, Nadia A ^a   Chahal, Nita ^a   Manlhiot, Cedric ^a   Kilburn, Jennifer ^a   Redington, Andrew N ^a   McCrindle, Brian W ^a  

^a UNIVERSITY OF TORONTO   (Canada)

Author keywords

Congenital heart disease; Education; Health care delivery; Pediatrics

Indexed keywords

ARTICLE; AWARENESS; CONGENITAL HEART DISEASE; FEMALE; HEALTH CARE DELIVERY; HEALTH PERSONNEL ATTITUDE; HUMAN; MAJOR CLINICAL STUDY; MALE; NURSE; PARENTAL ATTITUDE; PATIENT ATTITUDE; PHYSICIAN; QUESTIONNAIRE; SEMI STRUCTURED INTERVIEW; ADOLESCENT; ATTITUDE TO HEALTH; CANADA; CHILD; COMPARATIVE STUDY; CONGENITAL HEART MALFORMATION; FOLLOW UP; HEALTH CARE PERSONNEL; MORBIDITY; ORGANIZATION AND MANAGEMENT; OUTCOME ASSESSMENT; OUTPATIENT DEPARTMENT; PARENT; PATIENT CARE; PATIENT TRANSPORT; POPULATION DYNAMICS; STATISTICS;

ADOLESCENT; CHILD; CONTINUITY OF PATIENT CARE; FEMALE; FOLLOW-UP STUDIES; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH PERSONNEL; HEALTH TRANSITION; HEART DEFECTS, CONGENITAL; HUMANS; MALE; MORBIDITY; ONTARIO; OUTCOME ASSESSMENT (HEALTH CARE); OUTPATIENT CLINICS, HOSPITAL; PARENTS; PATIENT TRANSFER;

EID: 70349562977     PISSN: 0828282X     EISSN: None     Source Type: Journal    
DOI: 10.1016/s0828-282x(09)70145-x     Document Type: Article

References (24)

1. Moller JH, Taubert KA, Allen HD, Clark EB, Lauer RM. Cardiovascular health and disease in children: Current status. A Special Writing Group from the Task Force on Children and Youth, American Heart Association. Circulation 1994;89:923-30.
2. Williams WG, Webb GD. The emerging adult population with congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2000;3:227-33.
3. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993;14:570-6.
4. Harrison DA, Connelly M, Harris L, Luk C, Webb GD, McLaughlin PR. Sudden cardiac death in the adult with congenital heart disease. Can J Cardiol 1996;12:1161-3.
5. Oechslin EN, Harrison DA, Connelly MS, Webb GD, Siu SC. Mode of death in adults with congenital heart disease. Am J Cardiol 2000;86:1111-6.
6. Oechslin EN, Harrison DA, Harris L, et al. Reoperation in adults with repair of tetralogy of fallot: Indications and outcomes. J Thorac Cardiovasc Surg 1999;118:245-51.
7. Webb GD, McLaughlin PR, Gow RM, Liu PP, Williams WG. Transposition complexes. Cardiol Clin 1993;11:651-64.
8. Kaemmerer H, Fratz S, Bauer U, et al. Emergency hospital admissions and three-year survival of adults with and without cardiovascular surgery for congenital cardiac disease. J Thorac Cardiovasc Surg 2003;126:1048-52.
9. Karamlou T, McCrindle BW, Williams WG. Surgery insight: Late complications following repair of tetralogy of Fallot and related surgical strategies for management. Nat Clin Pract Cardiovasc Med 2006;3:611-22.
10. Nieminen HP, Jokinen EV, Sairanen HI. Causes of late deaths after pediatric cardiac surgery: A population-based study. J Am Coll Cardiol 2007;50:1263-71.
11. Billett J, Cowie MR, Gatzoulis MA, Vonder Muhll IF, Majeed A. Comorbidity, health care utilisation and process of care measures in patients with congenital heart disease in the UK: Cross-sectional population-based study with case-control analysis. Heart 2008;94:1194-9.
12. Reid GJ, Irvine MJ, McCrindle BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004;113:e197-205.
13. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110:1304-6.
14. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: Position paper of the Society for Adolescent Medicine. J Adolesc Health 2003;33:309-11.
15. Blum EW. Transition to adult health care: Setting the stage. J Adolesc Health 1995;17:3-5.
16. Scal P. Transition for youth with chronic conditions: Primary care physicians' approaches. Pediatrics 2002;110:1315-21.
17. Reiss JG, Gibson RW, Walker LR. Health care transition: Youth, family, and provider perspectives. Pediatrics 2005;115:112-20.
18. Rosen D. Between two worlds: bridging the cultures of child health and adult medicine. J Adolesc Health 1995; 17:10-6.
19. Geenen SJ, Powers LE, Sells W. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J Adolesc Health 2003;32:225-33.
20. Scal P Evans T, Blozis S, Okinow N, Blum R. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 1999;24:259-64.
21. Moons P, De Volder E, Budts W, et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001;86:74-80.
22. Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 2005;115:1607-12.
23. Por J, Golberg B, Lennox V, Burr P, Barrow J, Dennard L. Transition of care: Health care professionals' view. J Nuts Manag 2004;12:354-61.
24. Schor EL. Family pediatrics: Report of the Task Force on the Family. Pediatrics 2003;111:1541-71.