Journal of Adolescent Health
Volume 44, Issue 4 , Pages 316-322 , April 2009

Expectations and Experiences of Adolescents with Congenital Heart Disease on Being Transferred from Pediatric Cardiology to an Adult Congenital Heart Disease Program

  • Philip Moons, Ph.D.

      Affiliations

    • Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium
    • Division of Congenital and Structural Cardiology, University Hospitals of Leuven, Belgium
    • Corresponding Author InformationAddress correspondence to: Philip Moons, Ph.D., Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35/4, B-3000 Leuven, Belgium.
    • ,
  • Sara Pinxten, M.Sc.

      Affiliations

    • Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium
    • ,
  • Davy Dedroog, M.Sc.

      Affiliations

    • Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium
    • ,
  • Kristien Van Deyk, M.Sc.

      Affiliations

    • Division of Congenital and Structural Cardiology, University Hospitals of Leuven, Belgium
    • ,
  • Marc Gewillig, Ph.D.

      Affiliations

    • Department of Pediatric Cardiology, University Hospitals of Leuven, Belgium
    • ,
  • Deborah Hilderson, M.Sc.

      Affiliations

    • Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium
    • ,
  • Werner Budts, Ph.D.

      Affiliations

    • Division of Congenital and Structural Cardiology, University Hospitals of Leuven, Belgium

Received 8 August 2008 ,Accepted 12 November 2008.

References 

  1. Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39:1890–1900
  2. Hoffman JI, Kaplan S, Liberthson RR. Prevalence of congenital heart disease. Am Heart J. 2004;147:425–439
  3. Warnes CA, Liberthson R, Danielson GK, et al. Task force 1: The changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001;37:1170–1175
  4. Moons P, De Geest S, Budts W. Comprehensive care for adults with congenital heart disease: Expanding roles for nurses. Eur J Cardiovasc Nurs. 2002;1:23–28
  5. Foster E, Graham TP, Driscoll DJ, et al. Task force 2: Special health care needs of adults with congenital heart disease. J Am Coll Cardiol. 2001;37:1176–1183
  6. Deanfield J, Thaulow E, Warnes C, et al. Management of grown up congenital heart disease. Eur Heart J. 2003;24:1035–1084
  7. Knauth A, Verstappen A, Reiss J, Webb GD. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin. 2006;24:619–629vi
  8. Warnes CA. The adult with congenital heart disease: Born to be bad?. J Am Coll Cardiol. 2005;46:1–8
  9. Landzberg MJ, Murphy DJ, Davidson WR, et al. Task force 4: Organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol. 2001;37:1187–1193
  10. Moons P, D Hilderson, K Van Deyk. Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs. 2008;7:259–263
  11. Yeung E, Kay J, Roosevelt GE, et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol. 2008;125:62–65
  12. Iversen K, Vejlstrup NG, Sondergaard L, Nielsen OW. Screening of adults with congenital cardiac disease lost for follow-up. Cardiol Young. 2007;17:601–608
  13. Hilderson D, Van Deyk K, Moons P. Empirical evidence on transfer and transition in congenital heart disease: A bibliometric study. Acta Cardiologica. 2008;63:124
  14. Hilderson D, Van Deyk K, Moons P. Transfer and transition of children with heart disease: What is the evidence?. Eur J Cardiovasc Nurs. 2008;7:S6
  15. Rosenberg HC, Webb G. Referral of young adult patients with congenital heart disease to adult centres. The Canadian Adult Congenital Heart Network. Can J Cardiol. 1996;12:600–602
  16. 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–e205
  17. Dore A, de Guise P, Mercier LA. Transition of care to adult congenital heart centres: What do patients know about their heart condition?. Can J Cardiol. 2002;18:141–146
  18. Gurvitz MZ, Inkelas M, Lee M, et al. Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol. 2007;49:875–882
  19. Fiorentino L, Phillips D, Walker A, Hall D. Leaving paediatrics: The experience of service transition for young disabled people and their family carers. Health Soc Care Community. 1998;6:260–270
  20. Fiorentino L, Datta D, Gentle S, et al. Transition from school to adult life for physically disabled young people. Arch Dis Child. 1998;79:306–311
  21. Tuchman LK, Slap GB, Britto MT. Transition to adult care: Experiences and expectations of adolescents with a chronic illness. Child Care Health Dev. 2008;34:557–563
  22. Kirk S. Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev. 2008;34:567–575
  23. McCurdy C, DiCenso A, Boblin S, et al. There to here: Young adult patients' perceptions of the process of transition from pediatric to adult transplant care. Prog Transplant. 2006;16:309–316
  24. Stabile L, Rosser L, Porterfield KM, et al. Transfer versus transition: Success in pediatric transplantation brings the welcome challenge of transition. Prog Transplant. 2005;15:363–370
  25. Braj B, Picone G, Children HF, et al. The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis centre. CANNT J. 1999;9:41–46
  26. Brumfield K, Lansbury G. Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: A qualitative study of young Australian adults. Disabil Rehabil. 2004;26:223–234
  27. Shaw KL, Southwood TR, McDonagh JE. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology. 2004;43:770–778
  28. Visentin K, Koch T, Kralik D. Adolescents with type 1 diabetes: Transition between diabetes services. J Clin Nurs. 2006;15:761–769
  29. Colaizzi P. Psychological research as a phenomenologist views it. In:  Vallée R,  King M editor. Existential phenomenological alternatives for psychology. New York: Oxford University Press; 1978;p. 48–71
  30. Barbour RS. Checklists for improving rigour in qualitative research: A case of the tail wagging the dog?. Br Med J. 2001;322:1115–1117
  31. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105–112
  32. Polit DF, Beck CT. Nursing Research: Principles and Methods. 7th ed.. Philadelphia: Lippincott; 2004;
  33. Tobin GA, Begley CM. Methodological rigour within a qualitative framework. J Adv Nurs. 2004;48:388–396
  34. Hilderson D, Westhovens R, Wouters C, Moons P. Transitional care for adolescents with rheumatic diseases: Urgent need for more research. Child Care Health Dev. 2008;34:401–402
  35. Wacker A, Kaemmerer H, Hollweck R, et al. Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol. 2005;95:776–779
  36. Van Deyk K, Moons P, Dedroog D, et al. Adolescents' understanding of their congenital heart disease. Eur J Cardiovasc Nurs. 2007;6:S33–S34
  37. Van Deyk K, Moons P, Gewillig M, Budts W. Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care. Nurs Clin North Am. 2004;39:755–768
  38. Ostlie IL, Dale O, Moller A. From childhood to adult life with juvenile idiopathic arthritis (JIA): A pilot study. Disabil Rehabil. 2007;29:445–452
  39. Soanes C, Timmons S. Improving transition: A qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care. 2004;8:102–112
  40. Higgins SS, Tong E. Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs. 2003;18:93–98

PII: S1054-139X(08)00659-9

doi: 10.1016/j.jadohealth.2008.11.007

Journal of Adolescent Health
Volume 44, Issue 4 , Pages 316-322 , April 2009

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