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Attitude Toward and Current Practice of Transfer and Transition of Adolescents with Congenital Heart Disease in the United States of America and Europe

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Abstract

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.

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References

  1. Berg SK, Hertz PG (2007) Outpatient nursing clinic for congenital heart disease patients: Copenhagen Transition Program. J Cardiovasc Nurs 22:488–492

    PubMed  Google Scholar 

  2. Deanfield J, Thaulow E, Warnes C, Webb G, Kolbel F, Hoffman A, Sorenson K, Kaemmer H, Thilen U, Bink-Boelkens M, Iserin L, Daliento L, Silove E, Redington A, Vouhe P, Priori S, Alonso MA, Blanc JJ, Budaj A, Cowie M, Deckers J, Fernandez BE, Lekakis J, Lindahl B, Mazzotta G, Morais J, Oto A, Smiseth O, Trappe HJ, Klein W, Blomstrom-Lundqvist C, de Backer G, Hradec J, Mazzotta G, Parkhomenko A, Presbitero P, Torbicki A (2003) Management of grown up congenital heart disease. Eur Heart J 24:1035–1084

    Article  PubMed  Google Scholar 

  3. Dearani JA, Connolly HM, Martinez R, Fontanet H, Webb GD (2007) Caring for adults with congenital cardiac disease: successes and challenges for 2007 and beyond. Cardiol Young 17(Suppl 2):87–96

    PubMed  Google Scholar 

  4. Foster E, Graham TP Jr, Driscoll DJ, Reid GJ, Reiss JG, Russell IA, Sermer M, Siu SC, Uzark K, Williams RG, Webb GD (2001) Task force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol 37:1176–1183

    Article  PubMed  CAS  Google Scholar 

  5. Hilderson D, Van Deyk K, Moons P (2008) Empirical evidence on transfer and transition in congenital heart disease: a bibliometric study. Acta Cardiol 63:124

    Google Scholar 

  6. Hilderson D, Van Deyk K, Moons P (2008) Transfer and transition of children with heart disease: what is the evidence? Eur J Cardiovasc Nurs 7:S6

    Article  Google Scholar 

  7. Hudsmith LE, Thorne SA (2007) Transition of care from paediatric to adult services in cardiology. Arch Dis Child 92:927–930

    Article  PubMed  CAS  Google Scholar 

  8. Knauth A, Verstappen A, Reiss J, Webb GD (2006) Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 24:619–629, vi

    Article  PubMed  Google Scholar 

  9. Landzberg MJ, Murphy DJ Jr, Davidson WR Jr, Jarcho JA, Krumholz HM, Mayer JE Jr, Mee RB, Sahn DJ, Van Hare GF, Webb GD, Williams RG (2001) Task force 4: organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol 37:1187–1193

    Article  PubMed  CAS  Google Scholar 

  10. Moons P, Pinxten S, Dedroog D, Van Deyk K, Gewillig M, Hilderson D, Budts W (2009) Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to the adult congenital heart disease program. J Adolesc Health 44:316–322

    Article  PubMed  Google Scholar 

  11. Moons P, Engelfriet P, Kaemmerer H, Meijboom FJ, Oechslin E, Mulder BJ (2006) Delivery of care for adult patients with congenital heart disease in Europe: results from the Euro Heart Survey. Eur Heart J 27:1324–1330

    Article  PubMed  Google Scholar 

  12. Moons P, Hilderson D, Van Deyk K (2008) Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 7:259–263

    Article  PubMed  Google Scholar 

  13. Murphy DJ Jr, Foster E (2005) ACCF/AHA/AAP recommendations for training in pediatric cardiology. Task force 6: training in transition of adolescent care and care of the adult with congenital heart disease. J Am Coll Cardiol 46:1399–1401

    Article  PubMed  Google Scholar 

  14. Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD (2004) Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 113:e197–e205

    Article  PubMed  Google Scholar 

  15. Rosenberg HC, Webb G (1996) Referral of young adult patients with congenital heart disease to adult centres. The Canadian Adult Congenital Heart Network. Can J Cardiol 12:600–602

    PubMed  CAS  Google Scholar 

  16. Tong EM, Kools S (2004) Health care transitions for adolescents with congenital heart disease: patient and family perspectives. Nurs Clin North Am 39:727–740

    Article  PubMed  Google Scholar 

  17. Tong EM, Sparacino PS, Messias DK, Foote D, Chesla CA, Gilliss CL (1998) Growing up with congenital heart disease: the dilemmas of adolescents and young adults. Cardiol Young 8:303–309

    Article  PubMed  CAS  Google Scholar 

  18. Van Deyk K, Moons P, Gewillig M, Budts W (2004) Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care. Nurs Clin North Am 39:755–768

    Article  PubMed  Google Scholar 

  19. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, Del Nido P, Fasules JW, Graham TP Jr, Hijazi ZM, Hunt SA, King ME, Landzberg MJ, Miner PD, Radford MJ, Walsh EP, Webb GD (2008) ACC/AHA 2008 guidelines for the management of adults with congenital heart disease. A report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Circulation 118:2395–2451

    Google Scholar 

  20. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, Del Nido P, Fasules JW, Graham TP Jr, Hijazi ZM, Hunt SA, King ME, Landzberg MJ, Miner PD, Radford MJ, Walsh EP, Webb GD (2008) ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (writing committee to develop guidelines on the management of adults with congenital heart disease). Circulation 118:e714–e833

    Google Scholar 

  21. Webb G (2005) Improving the care of Canadian adults with congenital heart disease. Can J Cardiol 21:833–838

    PubMed  Google Scholar 

  22. Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT (2008) Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 125:62–65

    Article  PubMed  Google Scholar 

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Acknowledgments

This study was financially supported in part by the Jacqueline Bernheim Award 2005 to Philip Moons and by the Adult Congenital Heart Association. Deborah Hilderson holds a Clinical Research Fund Fellowship at the University Hospitals Leuven, Belgium.

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Authors and Affiliations

  1. Center for Health Services and Nursing Research, Catholic University of Leuven, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium

    Deborah Hilderson & Philip Moons

  2. Department of Pediatrics, Division of Pediatric Cardiology, University of Florida, Gainesville, FL, 32611, USA

    Arwa S. Saidi

  3. Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium

    Kristien Van Deyk & Philip Moons

  4. Adult Congenital Heart Association, 6757 Green Street, Suite 335, Philadelphia, PA, 19119, USA

    Amy Verstappen & Rachel Linstead

  5. Adult Congenital Heart Disease Program, Peter Munk Cardiac Centre, University Health Network, Toronto, ON, Canada

    Adrienne H. Kovacs

  6. Boston, Adult Congenital Heart (BACH) Service, Children’s Hospital, Boston, MA, 02115, USA

    Susan M. Fernandes

  7. Ahmanson/UCLA Adult Congenital Heart Disease Center, 650 Charles E. Young Drive South, Los Angeles, CA, 90095, USA

    Mary M. Canobbio

  8. Philadelphia Adult Congenital Heart Center, Children’s Hospital of Philadelphia, Hospital of the University of Pennsylvania, Philadelphia, PA, USA

    Desiree Fleck

  9. University of California, San Francisco, San Francisco, CA, 94143, USA

    Alison Meadows

Authors
  1. Deborah Hilderson
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  2. Arwa S. Saidi
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  3. Kristien Van Deyk
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  4. Amy Verstappen
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  5. Adrienne H. Kovacs
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  6. Susan M. Fernandes
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  7. Mary M. Canobbio
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  8. Desiree Fleck
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  9. Alison Meadows
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  10. Rachel Linstead
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  11. Philip Moons
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Corresponding author

Correspondence to Philip Moons.

Additional information

This study is conducted on behalf of the ACHA Transition Working Group.

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Hilderson, D., Saidi, A.S., Van Deyk, K. et al. Attitude Toward and Current Practice of Transfer and Transition of Adolescents with Congenital Heart Disease in the United States of America and Europe. Pediatr Cardiol 30, 786–793 (2009). https://doi.org/10.1007/s00246-009-9442-1

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  • DOI: https://doi.org/10.1007/s00246-009-9442-1

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