Nursing Care for Patients with Congenital Heart Disease During Follow-Up: Transfer and Transition

  • Serena Francesca Flocco
  • Eva GoossensEmail author


The developmental transition from childhood to adulthood is a complex process in the life of every youngster. This developmental process appears to be, however, more challenging and complex for children who are born with a congenital heart disease (CHD), because they not only have to deal with dynamics, changes, and difficulties characterizing adolescence, but also the consequences of their chronic condition and the need to adhere to lifelong follow-up care. Adolescence, with its prominent physical, biological, hormonal, psychological, and behavioral changes, is considered the most critical transitional phase of life. During this stage of life, patients with CHD, as compared to “healthy” adolescents, should learn how to integrate their medical condition with their identity and future lifestyle.

Hence, accompanying an adolescent afflicted with CHD from adolescence toward adulthood requires focused attention not solely to their medical needs but also to existential needs and academic and vocational pursuits, getting ready for the job market, having meaningful recreational activities and/or sports, and establishing a family when desired. Over the past decades, attention from healthcare professionals shifted from ensuring survival during the first years of life towards achievement of an acceptable quality of life for patients with CHD in the longer run.

Over the past decades, various national and international specialized heart centers developed clinical care pathways dedicated to these specific transitional needs of adolescents suffering from a congenital heart defect. Such programs create a bridge between the worlds of the child who grows into a teenager and that of the (emerging) adult.


  1. 1.
    Simonelli C. La formazione alla salute nell’età evolutiva: gli adolescenti e il rischio da HIV. Rivista di Sessuologia Clinica. 2000;VII(1):5–9.Google Scholar
  2. 2.
    Bertelloni S. Adolescentologia. Percorsi medici e socio-educativi. Milano: Tecniche nuove; 2010.Google Scholar
  3. 3.
    Camaioni L, Di Blasio P. Psicologia dello sviluppo, Bologna. 2nd ed: Il Mulino; 2007.Google Scholar
  4. 4.
    Havighurst R. Social and psychological needs of the aging. Ann Am Acad Pol Soc Sci. 1952;279(1):11–7.CrossRefGoogle Scholar
  5. 5.
    De Carlo N, Senatori Pilleri R. Le malattie croniche nel ciclo di vita. Aspetti psicologici, comunicativi e di organizzazione sanitaria. Milano: Franco Angeli; 2012.Google Scholar
  6. 6.
    Birks Y, Sloper P, Lewin R, Parsons J. Exploring health-related experiences of children and young people with congenital heart disease. Health Expect. 2007;10(1):16–29.CrossRefPubMedGoogle Scholar
  7. 7.
    Berghammer M, Dellborg M, Ekman I. Young adults experiences of living with congenital heart disease. Int J Cardiol. 2006;110(3):340–7.CrossRefPubMedGoogle Scholar
  8. 8.
    Moons P. The importance of methodological rigour in quality-of-life studies. Eur J Cardiothorac Surg. 2010;37(1):246–7.CrossRefPubMedGoogle Scholar
  9. 9.
    Chiang Y-T, Chen C-W, Su W-J, Wang J-K, Lu C-W, Li Y-F, et al. Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease. J Adv Nurs. 2015;71(3):599–608.CrossRefPubMedGoogle Scholar
  10. 10.
    Claessens P, Moons P, de Casterlé BD, Cannaerts N, Budts W, Gewillig M. What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. Eur J Cardiovasc Nurs. 2005;4(1):3–10.CrossRefPubMedGoogle Scholar
  11. 11.
    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(4):619–29, viCrossRefPubMedGoogle Scholar
  12. 12.
    Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child. 1999;81(3):271–5.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Heery E, Sheehan AM, While AE, Coyne I. Experiences and outcomes of transition from pediatric to adult health care services for young people with congenital heart disease: a systematic review. Congenit Heart Dis. 2015 Sep;10(5):413–27.CrossRefPubMedGoogle Scholar
  14. 14.
    Scal P, Horvath K, Garwick A. Preparing for adulthood: health care transition counseling for youth with arthritis. Arthritis Rheum. 2009;61(1):52–7.CrossRefPubMedGoogle Scholar
  15. 15.
    Davies H, Rennick J, Majnemer A. Transition from pediatric to adult health care for young adults with neurological disorders: parental perspectives. Can J. 2011;33(2):32–9.Google Scholar
  16. 16.
    Dore A, Guise P de, Mercier L. Transition of care to adult congenital heart centres: what do patients know about their heart condition? Can J 2002;18(2):141–146.Google Scholar
  17. 17.
    Goossens E, Van DK, Zupancic N. Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease. Eur J Cardiovasc Nurs. 2014;13(1):63–70.CrossRefPubMedGoogle Scholar
  18. 18.
    Mora M, Moons P. Assessing the level of evidence on transfer and transition in young people with chronic conditions: protocol of a scoping review. Syst Rev. 2016;5(1):166.CrossRefGoogle Scholar
  19. 19.
    Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, 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(7):570–6.CrossRefPubMedGoogle Scholar
  20. 20.
    David TJ. Transition from the paediatric clinic to the adult service. J R Soc Med. 2001;94(8):373–4.CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Goodhand J, Hedin CR, Croft NM, Lindsay JO. Adolescents with IBD: the importance of structured transition care. J Crohns Colitis. 2011;5(6):509–19.CrossRefPubMedGoogle Scholar
  22. 22.
    Amaria K, Stinson J, Cullen-Dean G, Sappleton K, Kaufman M. Tools for addressing systems issues in transition. Healthc Q. 2011;14 Spec No 3:72–6.PubMedGoogle Scholar
  23. 23.
    Leung Y, Heyman MB, Mahadevan U. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist. Inflamm Bowel Dis. 2011;17(10):2169–73.CrossRefPubMedGoogle Scholar
  24. 24.
    Schwartz LA, Tuchman LK, Hobbie WL, Ginsberg JP. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37(6):883–95.CrossRefPubMedGoogle Scholar
  25. 25.
    Mackner LM, Crandall WV, Szigethy EM. Psychosocial functioning in pediatric inflammatory bowel disease. Inflamm Bowel Dis. 2006;12(3):239–44.CrossRefPubMedGoogle Scholar
  26. 26.
    Shaw RJ, DeMaso DR. Respiratory illness. Textbook of pediatric psychosomatic medicine. Washington, DC: APA Publishing; 2010.CrossRefGoogle Scholar
  27. 27.
    Mahan JD, Betz CL, Okumura MJ, Ferris ME. Self-management and transition to adult health care in adolescents and young adults: a team process. Pediatr Rev. 2017;38(7):305–19.CrossRefPubMedGoogle Scholar
  28. 28.
    Sable C, Foster E, Uzark K, Bjornsen K, Canobbio M. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues. Circulation. 2011;123(13):1454–85.CrossRefPubMedGoogle Scholar
  29. 29.
    Baumgartner H, Budts W, Chessa M. Recommendations for organization of care for adults with congenital heart disease and for training in the subspecialty of “Grown-up Congenital Heart Disease” in Europe: a position paper of the Working Group on Grown-up Congenital Heart Disease of the European Society of Cardiology. Eur Heart J. 2014;35(11):686–90.CrossRefPubMedGoogle Scholar
  30. 30.
    Shaw K, Southwood T, McDonagh J. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology. 2004;43(6):770–8.CrossRefPubMedGoogle Scholar
  31. 31.
    Hudsmith LE, Thorne SA. Transition of care from paediatric to adult services in cardiology. Arch Dis Child. 2007;92:927–30.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Foster E, Graham TP, Driscoll DJ, Reid GJ, Reiss JG, Russell IA, et al. Task Force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol. 2001;37:1176–83.CrossRefPubMedGoogle Scholar
  33. 33.
    Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112–20.CrossRefPubMedGoogle Scholar
  34. 34.
    American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304–6.Google Scholar
  35. 35.
    Wray J, Maynard L. Specialist cardiac services: what do young people want? Cardiol Young. 2008;18(6):569–74.CrossRefPubMedGoogle Scholar
  36. 36.
    Simko LC, McGinnis KA, Schembri J. Educational needs of adults with congenital heart disease. J Cardiovasc Nurs. 2006;21(2):85–94.CrossRefPubMedGoogle Scholar
  37. 37.
    Betz CL. Adolescents in transition of adult care: why the concern? Nurs Clin North Am. 2004;39(4):681–713.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Pediatric and Adult Congenital Heart Disease CenterIRCCS Policlinico San Donato University HospitalSan Donato Milanese (MI)Italy
  2. 2.Department of Public Health and Primary CareAcademic Center for Nursing and Midwifery, KU LeuvenLeuvenBelgium
  3. 3.Research Foundation Flanders (FWO)BrusselsBelgium

Personalised recommendations