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From adolescents to adults with congenital heart disease: the role of transition

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Abstract

Improved surgical care during the last decades, together with advances in medical management, led to a remarkable increase in survival of patients with congenital heart disease (CHD). However, aging of the CHD population brings new challenges, and loss of follow-up of adolescents and adults with CHD is a major concern. It is crucial to optimize the transfer of patients with CHD from paediatric to adult health care services to prevent loss to follow-up. The transition process plays a central role in the future health and follow-up of the patient. The aim of this review is to explain and discuss the clinical impact of the transition process in adolescents with CHD. We will also discuss specific CHD adolescents’ problems.

Conclusion: Adolescence is a crucial phase for the formation of the personality. Understanding and acceptance of the responsibility for health at this stage through a transition process with a multidisciplinary team will determine the quality of future medical follow-up and probably limit psychosocial issues in their adult life.

What is known:

• Aging of the congenital heart disease population brings new challenges to the organisation of care.

• Loss of follow-up is a major concern for patients with congenital heart disease.

What is new:

• The quality of a formal transition process during adolescence will determine future outcomes in patients with congenital heart disease.

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Abbreviations

ACHD:

Adult congenital heart disease

CHD:

Congenital heart disease

References

  1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians–American Society of Internal Medicine (2002) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110:1304–1306

    Google Scholar 

  2. Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE (2008) Quality of life among parents of children with heart disease. Health Qual Life Outcomes 6:91. doi:10.1186/1477-7525-6-91

    Article  PubMed Central  PubMed  Google Scholar 

  3. Baumgartner H, Bonhoffer P, De Groot NMS et al (2010) ESC Guidelines for the management of grown-up congenital heart disease (new version 2010) The Task Force on the Management of Grown-up Congenital Heart Disease of the European Society of Cardiology. Eur Heart J 31:2915–2957. doi:10.1093/eurheartj/ehq249

    Article  PubMed  Google Scholar 

  4. Beauchesne LM, Therrien J, Alvarez N et al (2012) Structure and process measures of quality of care in adult congenital heart disease patients: a pan-Canadian study. Int J Cardiol 157:70–74. doi:10.1016/j.ijcard.2010

    Article  PubMed  Google Scholar 

  5. Brown NM, Maul TM, Reed H, Clayton S, Cook SC (2013) Obstacles encountered in developing an adult congenital heart disease program. Am J Cardiol 112:1953–1957. doi:10.1016/j.amjcard.2013.08.024

    Article  PubMed  Google Scholar 

  6. Burn J, Brennan P, Little J et al (1998) Recurrence risks in offspring of adults with major heart defects: results from first cohort of British collaborative study. Lancet 351:311–316

    Article  CAS  PubMed  Google Scholar 

  7. Cohen M, Mansoor D, Gagin R, Lorber A (2008) Perceived parenting style, self-esteem and psychological distress in adolescents with heart disease. Psychol Health Med 13:381–388. doi:10.1080/13548500701842925

    Article  PubMed  Google Scholar 

  8. De Bono J, Freeman LJ (2005) Aortic coarctation repair -lost and found: the role of local long term specialised care. Int J Cardiol 104:176–183. doi:10.1016/j.ijcard.2004.11.011

    Article  PubMed  Google Scholar 

  9. Deanfield J, Thaulow E, Warnes C et al (2003) Management of grown up congenital heart disease. Eur Heart J 24:1035–1084. doi:10.1016/S0195-668X(03)00131-3

    Article  PubMed  Google Scholar 

  10. Diller GP, Dimopoulos K, Okonko D et al (2006) Heart rate response during exercise predicts survival in adults with congenital heart disease. J Am Coll Cardiol 48:1250–1256. doi:10.1016/j.jacc.2006.05.051

    Article  PubMed  Google Scholar 

  11. Foster E, Graham TP Jr, Driscoll DJ et al (2001) Task force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol 37:1176–1183. doi:10.1016/S0735-1097(01)01277-3

    Article  CAS  PubMed  Google Scholar 

  12. Freitas IR, Castro M, Sarmento SL et al (2013) A cohort study on psychosocial adjustment and psychopathology in adolescents and young adults with congenital heart disease. BMJ Open 3:e001138. doi: 10.1136/bmjopen-2012-001138

  13. Goossens E, Stephani I, Hilderson D et al (2011) Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: an analysis of transfer destinations. J Am Coll Cardiol 57:2368–2374. doi:10.1016/j.jacc.2010.11.068

    Article  PubMed  Google Scholar 

  14. Goossens E, Van Deyk K, Zupancic N, Budts W, Moons P (2014) Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease. Eur J Cardiovasc Nurs 13:63–70. doi:10.1177/1474515113479231

    Article  PubMed  Google Scholar 

  15. Gurvitz M, Valente AM, Broberg C et al (2013) Prevalence and predictors of gaps in care among adult congenital heart disease patients. J Am Coll Cardiol 61:2180–2184. doi:10.1016/j.jacc.2013.02.048

    Article  PubMed Central  PubMed  Google Scholar 

  16. Habib G, Hoen B, Tornos P et al (2009) Guidelines on the prevention, diagnosis, and treatment of infective endocarditis (new version 2009): the Task Force on the Prevention, Diagnosis, and Treatment of Infective Endocarditis of the European Society of Cardiology (ESC). Eur Heart J 30:2369–2413. doi:10.1093/eurheartj/ehp285

    Article  PubMed  Google Scholar 

  17. Joesch JM, Smith KR (1997) Children’s health and their mothers’ risk of divorce and separation. Soc Biol 44:159–169

    CAS  PubMed  Google Scholar 

  18. Kaemmerer M, Vigl M, Seifert-Klauss V et al (2012) Counseling reproductive health issues in women with congenital heart disease. Clin Res Cardiol 101:901–907. doi:10.1007/s00392-012-0474-9

    Article  PubMed  Google Scholar 

  19. Kempny A, Dimopoulos K, Uebing A et al (2012) Reference values for exercise limitations among adults with congenital heart disease. Relation to activities of daily life-single centre experience and review of published data. Eur Heart J 33:1386–1396. doi:10.1093/eurheartj/ehr461

    Article  PubMed  Google Scholar 

  20. Kovacs AH, Saidi AS, Kuhl EA et al (2009) Depression and anxiety in adult congenital heart disease: predictors and prevalence. Int J Cardiol 137:158–164. doi:10.1016/j.ijcard.2008.06.042

    Article  PubMed  Google Scholar 

  21. Landzberg MJ, Murphy DJ Jr, Davidson WR Jr et al (2001) Task force 4: organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol 37:1187–1193. doi:10.1016/S0735-1097(01)01275-X

    Article  CAS  PubMed  Google Scholar 

  22. Lawoko S, Soares JJ (2006) Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung 35:301–314. doi:10.1016/j.hrtlng.2006.01.004

    Article  PubMed  Google Scholar 

  23. Lesch W, Specht K, Lux A, Frey M, Utens E, Bauer U (2014) Disease-specific knowledge and information preferences of young patients with congenital heart disease. Cardiol Young 24:321–330. doi:10.1017/S1047951113000413

    Article  PubMed  Google Scholar 

  24. Levine GN, Steinke EE, Bakaeen FG et al (2012) Sexual activity and cardiovascular disease: a scientific statement From the American Heart Association. Circulation 25:1058–1072. doi:10.1161/CIR.0b013e3182447787

    Article  Google Scholar 

  25. Mackie AS, Ionescu-Ittu R, Therrien J, Pilote L, Abrahamowicz M, Marelli AJ (2009) Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 120:302–309. doi:10.1161/CIRCULATIONAHA.108.839464

    Article  PubMed  Google Scholar 

  26. Mackie AS, Islam S, Magill-Evans J et al (2014) Healthcare transition for youth with heart disease: a clinical trial. Heart 100:1113–1118. doi:10.1136/heartjnl-2014-305748

    Article  PubMed  Google Scholar 

  27. Marelli AJ, Gurvitz M (2011) From numbers to guidelines. Prog Cardiovasc Dis 53:239–246. doi:10.1016/j.pcad.2010.10.001

    Article  PubMed  Google Scholar 

  28. Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L (2007) Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 115:163–172. doi:10.1161/CIRCULATIONAHA.106.627224

    Article  PubMed  Google Scholar 

  29. Meijboom F, Mulder B (2010) Problems in the organization of care for patients with adult congenital heart disease. Arch Cardiovasc Dis 103:411–415. doi:10.1016/j.acvd.2010.03.010

    Article  PubMed  Google Scholar 

  30. Moons P, Bovijn L, Budts W, Belmans A, Gewillig M (2010) Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 122:2264–2272. doi:10.1161/CIRCULATIONAHA.110.946343

    Article  PubMed  Google Scholar 

  31. Øyen N, Poulsen G, Boyd HA, Wohlfahrt J, Jensen PK, Melbye M (2009) Recurrence of congenital heart defects in families. Circulation 120:295–301. doi:10.1161/CIRCULATIONAHA.109.857987

    Article  PubMed  Google Scholar 

  32. Reid GJ, Irvine MJ, McCrindle BW et al (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. doi:10.1542/peds.113.3.e197

    Article  PubMed  Google Scholar 

  33. Reid GJ, Siu SC, McCrindle BW, Irvine MJ, Webb GD (2008) Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease. Int J Cardiol 125:332–338. doi:10.1016/j.ijcard.2007.02.040

    Article  PubMed  Google Scholar 

  34. Report of the British Cardiac Society Working Party (2002) Grown-up congenital heart (GUCH) disease: current needs and provision of service for adolescents and adults with congenital heart disease in the UK. Heart 88(Suppl 1):i1–i14. doi:10.1136/heart.88.suppl_1.i1

    Google Scholar 

  35. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM, Society for Adolescent Medicine (2003) Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 33:309–311. doi:10.1016/S1054-139X(03)00208-8

    Article  PubMed  Google Scholar 

  36. Rutishauser C, Sawyer SM, Ambresin AE (2014) Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care. Eur J Pediatr 173:1067–1074. doi:10.1007/s00431-014-2291-9

    Article  PubMed  Google Scholar 

  37. Sable C, Foster E, Uzark K et al (2011) Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 123:1454–1485. doi:10.1161/CIR.0b013e3182107c56

    Article  PubMed  Google Scholar 

  38. Saidi A, Kovacs AH (2009) Developing a transition program from pediatric to adult-focused cardiology care: practical considerations. Congenit Heart Dis 4:204–215. doi:10.1111/j.1747-0803.2009.00312.x

    Article  PubMed  Google Scholar 

  39. Sawicki GS, Lukens-Bull K, Yin X et al (2011) Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol 36:160–171. doi:10.1093/jpepsy/jsp128

    Article  PubMed Central  PubMed  Google Scholar 

  40. Sawicki GS, Whitworth R, Gunn L, Butterfield R, Lukens-Bull K, Wood D (2011) Receipt of health care transition counseling in the national survey of adult transition and health. Pediatrics 128:e521–e529. doi:10.1542/peds.2010-3017

    PubMed  Google Scholar 

  41. Singh TP, Curran TJ, Rhodes J (2007) Cardiac rehabilitation improves heart rate recovery following peak exercise in children with repaired con- genital heart disease. Pediatr Cardiol 28:276–279. doi:10.1007/s00246-006-0114-0

    Article  CAS  PubMed  Google Scholar 

  42. Sparacino PS, Tong EM, Messias DK, Foote D, Chesla CA, Gilliss CL (1997) The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 26:187–195

    Article  CAS  PubMed  Google Scholar 

  43. Swan L, Hillis WS (2000) Exercise prescription in adults with congenital heart disease: a long way to go. Heart 83:685–687. doi:10.1136/heart.83.6.685

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  44. Tong EM, Kools S (2004) Health care transitions for adolescents with congenital heart disease: patient and family perspectives. Nurs Clin N Am 39(4):727–740. doi:10.1016/j.cnur.2004.07.011

    Article  Google Scholar 

  45. 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 N Am 39:755–768. doi:10.1016/j.cnur.2004.07.010

    Article  Google Scholar 

  46. Van Deyk K, Pelgrims E, Troost E et al (2010) Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 106:1803–1807. doi:10.1016/j.amjcard.2010.08.020

    Article  PubMed  Google Scholar 

  47. Vigl M, Kaemmerer M, Seifert-Klauss V et al (2010) Contraception in women with congenital heart disease. Am J Cardiol 106:1317–1321. doi:10.1016/j.amjcard.2010.06.060

    Article  PubMed  Google Scholar 

  48. Viner R (2001) Barriers and good practice in transition from paediatric to adult care. J R Soc Med 94(Suppl 40):2–4

    PubMed Central  PubMed  Google Scholar 

  49. Viner R (2003) Bridging the gaps: transition for young people with cancer. Eur J Cancer 39:2684–2687. doi:10.1016/j.ejca.2003.08.004

    Article  CAS  PubMed  Google Scholar 

  50. Wacker A, Kaemmerer H, Hollweck R et al (2005) Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 95:776–779. doi:10.1016/j.amjcard.2004.11.036

    Article  PubMed  Google Scholar 

  51. Warnes CA, Liberthson R, Danielson GK et al (2001) Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 37:1170–1175. doi:10.1016/S0735-1097(01)01272-4

    Article  CAS  PubMed  Google Scholar 

  52. Warnes CA, Williams RG, Bashore TM et al (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). J Am Coll Cardiol 52:e143–e263. doi:10.1016/j.jacc.2008.10.001

    Article  PubMed  Google Scholar 

  53. 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. doi:10.1016/j.ijcard.2007.02.023

    Article  PubMed  Google Scholar 

  54. Zhang LF, Ho JSW, Kennedy SE (2014) A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Pediatr 14:4. doi:10.1186/1471-2431-14-4

    Article  PubMed Central  PubMed  Google Scholar 

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Conflict of interest

None

Author’s contributions

Pamela Moceri takes primary responsibility for communication with the journal. She has participated in the design of the work, literature search and analysis for the work. She has written the draft and has participated to the revisions. She approved the final version of the draft and agrees to be accountable for all aspects of this work.

Eva Goossens has participated in the analysis of the articles, in writing the manuscript and revising it for its intellectual content. She has approved the final version of the work and agrees to be accountable for all the aspects of this work.

Sebastien Hascoet, Carine Checler and Béatrice Bonello: They have participated to the literature analysis and data search. They have participated to important revisions of the work (for intellectual content). They approved the final version of the draft and agree to be accountable for this work.

Emile Ferrari and Philippe Acar: They have participated to the concept of the study, have revised the draft critically for important intellectual content, have approved the final manuscript and agree to be accountable for all aspects of the work.

Alain Fraisse: He has first imagined the work and has participated to the concept of the study. He has participated in writing the draft, interpreting data from the literature, revising our manuscript for important intellectual content. He has approved the final version of the work and agrees to be accountable for all the aspects of this work.

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Authors and Affiliations

  1. Cardiology Department, Pasteur University Hospital, Nice, France

    Pamela Moceri, Carine Checler & Emile Ferrari

  2. Paediatric Cardiology, Hôpitaux Pédiatriques Universitaires de Nice, Nice, France

    Pamela Moceri & Carine Checler

  3. Center for Health Services and Nursing Research, KU Leuven, Leuven, Belgium

    Eva Goossens

  4. Paediatric Cardiology, Purpan University Hospital, Toulouse, France

    Sebastien Hascoet & Philippe Acar

  5. Paediatric and Congenital Cardiology, La Timone University Hospital, Marseille, France

    Béatrice Bonello

  6. Paediatric Cardiology, Royal Brompton Hospital, London, UK

    Alain Fraisse

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  1. Pamela Moceri
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  2. Eva Goossens
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Corresponding author

Correspondence to Pamela Moceri.

Additional information

Communicated by Jaan Toelen

Revisions received: 04 November 2014 / 29 March 2015

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Moceri, P., Goossens, E., Hascoet, S. et al. From adolescents to adults with congenital heart disease: the role of transition. Eur J Pediatr 174, 847–854 (2015). https://doi.org/10.1007/s00431-015-2557-x

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  • DOI: https://doi.org/10.1007/s00431-015-2557-x

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