Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Review Article
  • Published:

So hard to say goodbye: transition from paediatric to adult cardiology care

Key Points

  • Important medical advances have allowed most patients with congenital or paediatric-onset cardiovascular conditions to reach adulthood

  • Although some countries have a mandated age at which patients transfer from paediatric to adult care, guidelines recommend a flexible age of transfer of 18–21 years

  • Many patients experience lapses of care during the transfer period; alarmingly, lapses are associated with a reduction in the quality of medical outcomes

  • Adolescents and young adults should be educated about the importance of life-long specialized cardiac follow-up care before, during, and after the transfer event

  • Transition is an extended process, distinct from transfer, that begins by early adolescence and is focused on patient education and self-management skills

  • The perspectives of patients, families, and care providers are important considerations in the development, adaptation, and individualization of transition programmes

Abstract

Important medical advances have created a large and growing population of adults who were diagnosed with congenital or paediatric-onset cardiovascular conditions as children and now require specialized cardiac care as adults. Although some adult patients continue to be cared for by paediatric cardiology programmes, guidelines recommend that patients transfer from paediatric to adult care at 18–21 years of age. Unfortunately, lapses in care during the transfer period are common and associated with poor health outcomes. Comprehensive transition programmes are necessary to maintain continuity of care and effectively prepare adolescents and young adults for the differences between paediatric and adult cardiac care programmes. Transition, unlike transfer, is an extended process that begins during childhood or early adolescence and focuses on patient education and fostering self-management skills and appropriate interdependence. The perspectives of patients, families, and care providers should be recognized and incorporated into transition programmes, and should be used to adapt strategies to meet the needs of individual patients and families. This Review summarizes the current knowledge on the transition of young patients from paediatric to adult cardiology care from the perspectives of all stakeholders, and offers practical recommendations for the development of transition programmes.

This is a preview of subscription content, access via your institution

Access options

Rent or buy this article

Prices vary by article type

from$1.95

to$39.95

Prices may be subject to local taxes which are calculated during checkout

Figure 1: Stakeholder perspectives.
Figure 2: Suggested timeline for transition preparation.

Similar content being viewed by others

References

  1. Warnes, C. A. The adult with congenital heart disease: born to be bad? J. Am. Coll. Cardiol. 46, 1–8 (2005).

    Article  PubMed  Google Scholar 

  2. Marelli, A. J., Mackie, A. S., Ionescu-Ittu, R., Rahme, E. & Pilote, L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 115, 163–172 (2007).

    Article  PubMed  Google Scholar 

  3. Wray, J., Frigiola, A. & Bull, C. for the Adult Congenital Heart disease Research Network (ACoRN). Loss to specialist follow-up in congenital heart disease; out of sight, out of mind. Heart 99, 485–490 (2013).

    Article  PubMed  Google Scholar 

  4. Wren, C. & O'Sullivan, J. J. Loss to follow-up of adults with repaired congenital heart disease. Heart 99, 440–441 (2013).

    Article  PubMed  Google Scholar 

  5. Friesen, C. L. et al. Follow-up of tetralogy of Fallot patients: tertiary centre versus satellite clinic. Cardiol. Young 21, 444–453 (2011).

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  7. Reid, G. J. 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 113, e197–e205 (2004).

    Article  PubMed  Google Scholar 

  8. American Academy of Pediatrics, American Academy of Family Physicians, and 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 110, 1304–1306 (2002).

  9. Cooley, W. C. & Sagerman, P. J. for the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128, 182–200 (2011).

    Article  PubMed  Google Scholar 

  10. Sable, C. et al. 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 (2011).

    Article  PubMed  Google Scholar 

  11. Marino, B. S. et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 126, 1143–1172 (2012).

    Article  PubMed  Google Scholar 

  12. Hilderson, D. 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).

    Article  PubMed  Google Scholar 

  13. Norris, M. D. et al. Prevalence and patterns of retention in cardiac care in young adults with congenital heart disease. J. Pediatr. 163, 902–904.e1 (2013).

    Article  PubMed  Google Scholar 

  14. Gurvitz, M. Z. et al. Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J. Am. Coll. Cardiol. 49, 875–882 (2007).

    Article  PubMed  Google Scholar 

  15. Mackie, A. S. et al. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 120, 302–309 (2009).

    Article  PubMed  Google Scholar 

  16. Gurvitz, M. et al. Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial). J. Am. Coll. Cardiol. 61, 2180–2184 (2013).

    Article  PubMed  PubMed Central  Google Scholar 

  17. Goossens, E. et al. 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 (2011).

    Article  PubMed  Google Scholar 

  18. Wacker, A. et al. 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 (2005).

    Article  PubMed  Google Scholar 

  19. Pai, A. L. & Ostendorf, H. M. Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: a literature review. Children's Health Care 40, 16–33 (2011).

    Article  Google Scholar 

  20. Butow, P. et al. Review of adherence-related issues in adolescents and young adults with cancer. J. Clin. Oncol. 28, 4800–4809 (2010).

    Article  PubMed  Google Scholar 

  21. Lotstein, D. S. et al. Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence. Pediatrics 131, e1062–e1070 (2013).

    Article  PubMed  PubMed Central  Google Scholar 

  22. Rianthavorn, P., Ettenger, R. B., Malekzadeh, M., Marik, J. L. & Struber, M. Noncompliance with immunosuppressive medications in pediatric and adolescent patients receiving solid-organ transplants. Transplantation 77, 778–782 (2004).

    Article  PubMed  Google Scholar 

  23. Andreoni, K. A. et al. Age-related kidney transplant outcomes: health disparities amplified in adolescence. JAMA Intern. Med. http://dx.doi.org/10.1001/jamainternmed.2013.8495.

  24. de Bono, J. & Freeman, L. J. Aortic coarctation repair—lost and found: the role of local long term specialised care. Int. J. Cardiol. 104, 176–183 (2005).

    Article  PubMed  Google Scholar 

  25. Iversen, K., Vejlstrup, N. G., Sondergaard, L. & Nielsen, O. W. Screening of adults with congenital cardiac disease lost for follow-up. Cardiol. Young 17, 601–608 (2007).

    Article  PubMed  Google Scholar 

  26. Yeung, E., Kay, J., Roosevelt, G. E., Brandon, M. & Yetman, A. T. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int. J. Cardiol. 125, 62–65 (2008).

    Article  PubMed  Google Scholar 

  27. Clarizia, N. A. et al. Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can. J. Cardiol. 25, e317–e322 (2009).

    Article  PubMed  PubMed Central  Google Scholar 

  28. Sonneveld, H. M., Strating, M. M., van Staa, A. L. & Nieboer, A. P. Gaps in transitional care: what are the perceptions of adolescents, parents and providers? Child Care Health Dev. 39, 69–80 (2013).

    Article  CAS  PubMed  Google Scholar 

  29. Applebaum, M. A., Lawson, E. F. & von Scheven, E. Perception of transition readiness and preferences for use of technology in transition programs: teens' ideas for the future. Int. J. Adolesc. Med. Health 25, 119–125 (2013).

    Article  PubMed  Google Scholar 

  30. Reid, G. J., Webb, G. D., McCrindle, B. W., Irvine, M. J. & Siu, S. C. Health behaviors among adolescents and young adults with congenital heart disease. Congenit. Heart Dis. 3, 16–25 (2008).

    Article  PubMed  Google Scholar 

  31. Reid, G. J., Siu, S. C., McCrindle, B. W., Irvine, M. J. & Webb, G. D. Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease. Int. J. Cardiol. 125, 332–338 (2008).

    Article  PubMed  Google Scholar 

  32. Dore, A., de Guise, P. & Mercier, L. A. Transition of care to adult congenital heart centres: what do patients know about their heart condition? Can. J. Cardiol. 18, 141–146 (2002).

    PubMed  Google Scholar 

  33. Reid, G. J. et al. Estimates of life expectancy by adolescents and young adults with congenital heart disease. J. Am. Coll. Cardiol. 48, 349–355 (2006).

    Article  PubMed  Google Scholar 

  34. Mackie, A. S., Rempel, G. R., Rankin, K. N., Nicholas, D. & Magill-Evans, J. Risk factors for loss to follow-up among children and young adults with congenital heart disease. Cardiol. Young 22, 307–315 (2012).

    Article  PubMed  Google Scholar 

  35. Moons, P. et al. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J. Adolesc. Health 44, 316–322 (2009).

    Article  PubMed  Google Scholar 

  36. Anthony, S. J. et al. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am. J. Transplant. 9, 614–619 (2009).

    Article  CAS  PubMed  Google Scholar 

  37. McCurdy, C. et al. There to here: young adult patients' perceptions of the process of transition from pediatric to adult transplant care. Prog. Transplant. 16, 309–316 (2006).

    Article  PubMed  Google Scholar 

  38. Arnett, J. J. Emerging adulthood. A theory of development from the late teens through the twenties. Am. Psychol. 55, 469–480 (2000).

    Article  CAS  PubMed  Google Scholar 

  39. van Staa, A. L., Jedeloo, S., van Meeteren, J. & Latour, J. M. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child. Care Health Dev. 37, 821–832 (2011).

    Article  CAS  PubMed  Google Scholar 

  40. Tyagi, M. et al. What do we know about cognitive functioning in adult congenital heart disease? Cardiol. Young http://dx.doi.org/10.1017/S1047951113000747.

  41. Ladouceur, M. et al. Key issues of daily life in adults with congenital heart disease. Arch. Cardiovasc. Dis. 106, 404–412 (2013).

    Article  PubMed  Google Scholar 

  42. Berghammer, M., Dellborg, M. & Ekman, I. Young adults experiences of living with congenital heart disease. Int. J. Cardiol. 110, 340–347 (2006).

    Article  PubMed  Google Scholar 

  43. Pagé, M. G., Kovacs, A. H. & Irvine, J. How do psychosocial challenges associated with living with congenital heart disease translate into treatment interests and preferences? A qualitative approach. Psychol. Health 27, 1260–1270 (2012).

    Article  PubMed  Google Scholar 

  44. Beeri, M., Haramati, Z., Rein, J. J. & Nir, A. Parental knowledge and views of pediatric congenital heart disease. Isr. Med. Assoc. J. 3, 194–197 (2001).

    CAS  PubMed  Google Scholar 

  45. Fernandes, S. M. et al. Parental knowledge regarding lifelong congenital cardiac care. Pediatrics 128, e1489–e1495 (2011).

    Article  PubMed  Google Scholar 

  46. Geenen, S. J., Powers, L. E. & Sells, W. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J. Adolesc. Health 32, 225–233 (2003).

    Article  PubMed  Google Scholar 

  47. Ong, L., Nolan, R. P., Irvine, J. & Kovacs, A. H. Parental overprotection and heart-focused anxiety in adults with congenital heart disease. Int. J. Behav. Med. 18, 260–267 (2011).

    Article  PubMed  Google Scholar 

  48. Hutchinson, J. W. & Stafford, E. M. Changing parental opinions about teen privacy through education. Pediatrics 116, 966–971 (2005).

    Article  PubMed  Google Scholar 

  49. Fox, A. Physicians as barriers to successful transitional care. Int. J. Adolesc. Med. Health 14, 3–7 (2002).

    Article  PubMed  Google Scholar 

  50. Marino, B. S. et al. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 123, e708–e715 (2009).

    Article  PubMed  Google Scholar 

  51. Fernandes, S. M. et al. Referral patterns and perceived barriers to adult congenital heart disease care: results of a survey of U.S. pediatric cardiologists. J. Am. Coll. Cardiol. 60, 2411–2418 (2012).

    Article  PubMed  Google Scholar 

  52. Niwa, K. et al. Survey of specialized tertiary care facilities for adults with congenital heart disease. Int. J. Cardiol. 96, 211–216 (2004).

    Article  PubMed  Google Scholar 

  53. Beauchesne, L. M. et al. Structure and process measures of quality of care in adult congenital heart disease patients: a pan-Canadian study. Int. J. Cardiol. 157, 70–74 (2012).

    Article  PubMed  Google Scholar 

  54. Bjornsen, K. D. Health care transition in congenital heart disease: the providers' view point. Nurs. Clin. North Am. 39, 715–726 (2004).

    Article  PubMed  Google Scholar 

  55. Jalkut, M. K. & Allen, P. J. Transition from pediatric to adult health care for adolescents with congenital heart disease: a review of the literature and clinical implications. Pediatr. Nurs. 35, 381–387 (2009).

    PubMed  Google Scholar 

  56. Silversides, C. K. et al. Canadian Cardiovascular Society 2009 Consensus Conference on the management of adults with congenital heart disease: executive summary. Can. J. Cardiol. 26, 143–150 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  57. Warnes, C. A. et al. 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). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J. Am. Coll. Cardiol. 52, e143–e263 (2008).

    Article  PubMed  Google Scholar 

  58. Baumgartner, H. et al. ESC Guidelines for the management of grown-up congenital heart disease (new version 2010). Eur. Heart J. 31, 2915–2957 (2010).

    Article  PubMed  Google Scholar 

  59. Peter, N. G., Forke, C. M., Ginsburg, K. R. & Schwarz, D. F. Transition from pediatric to adult care: internists' perspectives. Pediatrics 123, 417–423 (2009).

    Article  PubMed  Google Scholar 

  60. Okumura, M. J., Hersh, A. O., Hilton, J. F. & Lotstein, D. S. Change in health status and access to care in young adults with special health care needs: results from the 2007 national survey of adult transition and health. J. Adolesc. Health 52, 413–418 (2013).

    Article  PubMed  Google Scholar 

  61. Lotstein, D. S., Inkelas, M., Hays, R. D., Halfon, N. & Brook, R. Access to care for youth with special health care needs in the transition to adulthood. J. Adolesc. Health 43, 23–29 (2008).

    Article  PubMed  Google Scholar 

  62. McManus, M. A. et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics 131, 1090–1097 (2013).

    Article  PubMed  Google Scholar 

  63. Holmes-Walker, D. J., Llewellyn, A. C. & Farrell, K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15–25 years. Diabet. Med. 24, 764–769 (2007).

    Article  CAS  PubMed  Google Scholar 

  64. Rosen, D. S., Blum, R. W., Britto, M., Sawyer, S. M. & Siegel, D. M. 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 (2003).

    Article  PubMed  Google Scholar 

  65. Saidi, A. & Kovacs, A. H. Developing a transition program from pediatric- to adult-focused cardiology care: practical considerations. Congenit. Heart Dis. 4, 204–215 (2009).

    Article  PubMed  Google Scholar 

  66. Scal, P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics 110, 1315–1321 (2002).

    PubMed  Google Scholar 

  67. Rearick, E. Enhancing success in transition service coordinators: use of transformational leadership. Prof. Case Manag. 12, 283–287 (2007).

    Article  PubMed  Google Scholar 

  68. Betz, C. L. & Redcay, G. Dimensions of the transition service coordinator role. J. Spec. Pediatr. Nurs. 10, 49–59 (2005).

    Article  PubMed  Google Scholar 

  69. Berg, S. K. & Hertz, P. G. Outpatient nursing clinic for congenital heart disease patients: Copenhagen Transition Program. J. Cardiovasc. Nurs. 22, 488–492 (2007).

    Article  PubMed  Google Scholar 

  70. Kovacs, A. H. et al. The Toronto congenital heart disease transition task force. Prog. Ped. Card. 34, 21–26 (2012).

    Article  Google Scholar 

  71. Crowley, R., Wolfe, I., Lock, K. & McKee, M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch. Dis. Child. 96, 548–553 (2011).

    Article  CAS  PubMed  Google Scholar 

  72. Annunziato, R. A. et al. Transitioning health care responsibility from caregivers to patient: a pilot study aiming to facilitate medication adherence during this process. Pediatr. Transplant. 12, 309–315 (2008).

    Article  PubMed  Google Scholar 

  73. Goossens, E., Van Deyk, K., Zupancic, N., Budts, W. & Moons, P. Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease. Eur. J. Cardiovasc. Nurs. http://dx.doi.org/10.1177/1474515113479231.

  74. Novak, M., Costantini, L., Schneider, S. & Beanlands, H. Approaches to self-management in chronic illness. Semin. Dial. 26, 188–194 (2013).

    Article  PubMed  Google Scholar 

  75. Amaria, K., Stinson, J., Cullen-Dean, G., Sappleton, K. & Kaufman, M. Tools for addressing systems issues in transition. Healthc. Q. 14, 72–76 (2011).

    Article  PubMed  Google Scholar 

  76. Valente, A. M. et al. Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial: HEART-ACHD). Int. J. Cardiol. 168, 3236–3240 (2013).

    Article  PubMed  Google Scholar 

  77. Reiss, J. G., Gibson, R. W. & Walker, L. R. Health care transition: youth, family, and provider perspectives. Pediatrics 115, 112–120 (2005).

    Article  PubMed  Google Scholar 

  78. McLaughlin, S. E. et al. Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics 121, e1160–e1166 (2008).

    Article  PubMed  Google Scholar 

  79. Maturo, D. et al. Development of a protocol for transitioning adolescents with HIV infection to adult care. J. Pediatr. Health Care 25, 16–23 (2011).

    Article  PubMed  Google Scholar 

  80. Stinson, J. et al. A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int. J. Adolesc. Med. Health http://dx.doi.org/10.1515/ijamh-2013-0512.

  81. Sawicki, G. S. et al. Receipt of health care transition counseling in the national survey of adult transition and health. Pediatrics 128, e521–e529 (2011).

    PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Contributions

Both authors researched data for the article, discussed the content, and reviewed and edited the manuscript.

Corresponding author

Correspondence to Brian W. McCrindle.

Ethics declarations

Competing interests

The authors declare no competing financial interests.

PowerPoint slides

Rights and permissions

Reprints and permissions

About this article

Cite this article

Kovacs, A., McCrindle, B. So hard to say goodbye: transition from paediatric to adult cardiology care. Nat Rev Cardiol 11, 51–62 (2014). https://doi.org/10.1038/nrcardio.2013.172

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/nrcardio.2013.172

This article is cited by

Search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing