Advertisement

Development of a transition program for adolescents with congenital heart disease

  • Michèle de HossonEmail author
  • Julie De Backer
  • Daniël De Wolf
  • Katya De Groote
  • Laurent Demulier
  • Saskia Mels
  • Kristof Vandekerckhove
  • Eva Goossens
Original Article

Abstract

Thanks to advances in care, most children with congenital heart disease nowadays survive into adulthood. The majority of patients remain at high risk for future complications. Hence, life-long follow-up is mandatory. Care needs of patients evolve, especially when reaching adulthood. A structured transition period to adult care is advocated. Currently, a fully detailed and structured transition program is not available for patients with congenital heart disease. The aim is to describe the development and design of a multicomponent transition program for adolescents with congenital heart disease, called “Transition with a heart.” Transition with a heart was developed based on the Dutch program “On your own feet,” starting at the age of 12 years and continuing after transfer. The most vital core components include a general and individualized flowchart, adolescent-centered communication, a joined transfer consultation, and an appointed transition coordinator. Adolescents are gradually informed about their condition and potential late consequences in adult life and stimulated to take medical care in their own hands.

Conclusion: Transition with a heart is a practical, multicomponent, comprehensive transition program developed to cover the essential aspects of transitional care for adolescents with congenital heart disease (i.e., continuity of care, disease knowledge, and self-management skills). Interventions were selected from the highest sources of scientific evidence currently available.

Clinical trial registration: Not applicable

What is Known:

• Transition towards adult life and health care is a complex process, requiring careful patientsguidance. Various task forces have described the need and potential benefits of transition programs in young people with chronic conditions. Details about the practical development and content of such programs in congenital heart disease are, however, currently lacking.

What is New:

• This method paper presents the development and design of a person-centered multicomponent transition program for adolescents with congenital heart disease comprising interventional components covering the most important aspects of transitional care: promoting autonomy, disease knowledge, and continuity of care.

Keywords

Heart defects congenital Transition to adult care Adolescent development Chronic disease Program development 

Abbreviations

CHD

Congenital heart disease

ITP

Individual transition plan

LKQCHD

Leuven Knowledge Questionnaire for Congenital Heart Disease

OYOF

On your own feet

PedsQl

Pediatric Quality of Life inventory

TC

Transition coordinator

TRAQ

Transition Readiness Assessment Questionnaire

Notes

Acknowledgments

The authors acknowledge the valuable contribution of Joseph Panzer (MD), Hans De Wilde (MD), Karen Logghe (RN), Ilse Coomans (engineer), and Erika Van Waerbeke (RN) in the development of TWAH.

Authors’ contributions

Michèle de Hosson: This author is the program coordinator of TWAH and drafted the manuscript.

Julie De Backer: This author coordinates the Adult Congenital Heart Disease program. She started transfer clinics with the pediatric cardiologists and is co-designer of TWAH. She critically reviewed the manuscript.

Daniël De Wolf: This author coordinates the Pediatric Congenital Heart Disease program. He is co-designer of TWAH, did an assessment of the methodology and critically reviewed the manuscript.

Katya De Groote: This author participates as a pediatric congenital cardiologist to the transition program and critically reviewed the manuscript.

Laurent Demulier: This author participates as an adult congenital cardiologist to the transition program and critically reviewed the manuscript.

Saskia Mels: This author participates as a pediatric psychologist to the transition program and critically reviewed the manuscript.

Kristof Vandekerckhove: This author participates as a pediatric congenital cardiologist to the transition program and critically reviewed the manuscript.

Eva Goossens: This author with expertise in transitional care and research guided the whole conceptualization of this method paper. She critically reviewed and revised all versions of the manuscript.

Funding information

Eva Goossens is funded as Post-Doctoral Researcher, Julie De Backer is funded as Senior Clinical Researcher, and Kristof Vandekerckhove is funded for clinical research (Grant No. 1701418), all by the Research Foundation Flanders. However, the authors have no financial relationships relevant to this article.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. 1.
    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.  https://doi.org/10.1161/CIRCULATIONAHA.110.946343 CrossRefPubMedGoogle Scholar
  2. 2.
    Baumgartner H, Budts W, Chessa M, Deanfield J, Eicken A, Holm J, Iserin L, Meijboom F, Stein J, Szatmari A, Trindade PT, Walker F (2014) 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 35:686–690.  https://doi.org/10.1093/eurheartj/eht572 CrossRefPubMedGoogle Scholar
  3. 3.
    Deanfield J, Thaulow E, Warnes C, Webb G, Kolbel F, Hoffman A, Sorenson K, Kaemmerer H, Thilen U, Bink-Boelkens M (2003) Management of grown up congenital heart disease. Eur Heart J 24:1035–1084.  https://doi.org/10.1016/s0195-668x(03)00131-3 CrossRefPubMedGoogle Scholar
  4. 4.
    Knauth Meadows A, Bosco V, Tong E, Fernandes S, Saidi A (2009) Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease. Curr Cardiol Rep 11:291–297CrossRefGoogle Scholar
  5. 5.
    Kaufman M, Pinzon J (2007) Canadian Paediatric Society. Adolescent health committee transition to adult care for youth with special health care needs. Paediatr Child Health 12:785–788.  https://doi.org/10.1093/pch/12.9.785 CrossRefGoogle Scholar
  6. 6.
    Saidi A, Kovacs AH (2009) Developing a transition program from pediatric- to adult-focused cardiology care: practical considerations. Congenit Heart Dis 4(4):204–215.  https://doi.org/10.1111/j.1747-0803.2009.00312.x CrossRefPubMedGoogle Scholar
  7. 7.
    Sable C, Foster E, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, Graham TP, Gurvitz MZ, Kovacs A, Meadows AK, Reid GJ, Reiss JG, Rosenbaum KN, Sagerman PJ, Saidi A, Schonberg R, Shah S, Tong E, Williams RG (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.  https://doi.org/10.1161/CIR.0b013e3182107c56 CrossRefPubMedGoogle Scholar
  8. 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.  https://doi.org/10.1016/j.ccl.2006.08.010 CrossRefPubMedGoogle Scholar
  9. 9.
    Foster E, Graham TP, Driscoll DJ, Reid GJ, Reiss JG, Russell IA, Sermer M, Siu SC, Uzark K, Williams RG (2001) Task force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol 37:1176–1183.  https://doi.org/10.1016/s0735-1097(01)01277-3 CrossRefPubMedGoogle Scholar
  10. 10.
  11. 11.
    Van Staa A (2011) Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research. Patient Educ Couns 82:455–464.  https://doi.org/10.1016/j.pec.2010.12.001 CrossRefPubMedGoogle Scholar
  12. 12.
    Van Staa A (2012) On Your Own Feet. Adolescents with chronic conditions and their preferences. Dissertation. Hogeschool Amsterdam, Amsterdam: https://repub.eur.nl/pub/32973/. Accessed 22 October 2019.
  13. 13.
    Jedeloo S, van Staa A, Latour JM, van Exel NJ (2010) Preferences for health care and self-management among Dutch adolescents with chronic conditions: a Q-methodological investigation. Int J Nurs Stud 47:593–603.  https://doi.org/10.1016/j.ijnurstu.2009.10.006 CrossRefPubMedGoogle Scholar
  14. 14.
    Van Staa A, Jedeloo S, van der Stege H (2011) “What we want”: chronically ill adolescents’ preferences and priorities for improving health care. Patient Prefer Adherence 5:291–305.  https://doi.org/10.2147/PPA.S17184 CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Van Staa AL, Jedeloo S, van Meeteren J, Latour JM (2011) Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev 37:821–832.  https://doi.org/10.1111/j.1365-2214.2011.01261.x CrossRefPubMedGoogle Scholar
  16. 16.
    Kovacs AH, McCrindle BW (2014) So hard to say goodbye: transition from paediatric to adult cardiology care. Nat Rev Cardiol 11:51–62.  https://doi.org/10.1038/nrcardio.2013.172 CrossRefPubMedGoogle Scholar
  17. 17.
    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.  https://doi.org/10.1542/peds.113.3.e197 CrossRefPubMedGoogle Scholar
  18. 18.
    Van Staa A, Sattoe JN, Strating MM (2015) Experiences with and outcomes of two interventions to maximize engagement of chronically ill adolescents during hospital consultations: a mixed methods study. J Pediatr Nurs 30:757–775.  https://doi.org/10.1016/j.pedn.2015.05.028 CrossRefPubMedGoogle Scholar
  19. 19.
    Committee on Adolescence American Academy of Pediatrics (2008) Achieving quality health services for adolescents. Pediatrics 121:1263–1270.  https://doi.org/10.1542/peds.2008-0694 CrossRefGoogle Scholar
  20. 20.
    Moons P, De Volder E, Budts W, De Geest S, Elen J, Waeytens K, Gewillig M (2001) What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 86:74–80.  https://doi.org/10.1136/heart.86.1.74 CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, Del Nido P, Fasules JW, Graham TP, Hijazi ZM (2008) ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: executive summary: a report of the American College of Cardiology/American Heart Association task force on practice guidelines (writing committee to develop guidelines for 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 52:1890–1947.  https://doi.org/10.1016/j.jacc.2008.10.001 CrossRefGoogle Scholar
  22. 22.
    Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JI, Somerville J, Williams RG, Webb GD (2001) Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 37:1170–1175.  https://doi.org/10.1016/s0735-1097(01)01272-4 CrossRefPubMedGoogle Scholar
  23. 23.
    Acuna Mora M, Sparud-Lundin C, Bratt EL, Moons P (2017) Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project). BMJ Open 7:e014593.  https://doi.org/10.1136/bmjopen-2016-014593 CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M (2008) Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 337:a1655.  https://doi.org/10.1136/bmj.a1655 CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Mackie AS, Islam S, Magill-Evans J, Rankin KN, Robert C, Schuh M, Nicholas D, Vonder Muhll I, McCrindle BW, Yasui Y, Rempel GR (2014) Healthcare transition for youth with heart disease: a clinical trial. Heart 100:1113–1118.  https://doi.org/10.1136/heartjnl-2014-305748 CrossRefPubMedGoogle Scholar
  26. 26.
    Mackie AS, Rempel GR, Kovacs AH, Kaufman M, Rankin KN, Jelen A, Manlhiot C, Anthony SJ, Magill-Evans J, Nicholas D, Sananes R, Oechslin E, Dragieva D, Mustafa S, Williams E, Schuh M, McCrindle BW (2016) A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the Chapter 2 study. BMC Cardiovasc Disord 16:127.  https://doi.org/10.1186/s12872-016-0307-2 CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Mackie AS, Rempel GR, Kovacs AH, Kaufman M, Rankin KN, Jelen A, Yaskina M, Sananes R, Oechslin E, Dragieva D, Mustafa S, Williams E, Schuh M, Manlhiot C, Anthony SJ, Magill-Evans J, Nicholas D, McCrindle BW (2018) Transition intervention for adolescents with congenital heart disease. J Am Coll Cardiol 71:1768–1777.  https://doi.org/10.1016/j.jacc.2018.02.043 CrossRefPubMedGoogle Scholar
  28. 28.
    Gilbert AL, Rickert VI, Aalsma MC (2014) Clinical conversations about health: the impact of confidentiality in preventive adolescent care. J Adolesc Health 55:672–677.  https://doi.org/10.1016/j.jadohealth.2014.05.016 CrossRefPubMedGoogle Scholar
  29. 29.
    Schmidt S, Markwart H, Bomba F, Muehlan H, Findeisen A, Kohl M, Menrath I, Thyen U (2018) Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes. Eur J Pediatr 177:497–505.  https://doi.org/10.1007/s00431-017-3080-z CrossRefPubMedGoogle Scholar
  30. 30.
    Van Deyk K, Pelgrims E, Troost E, Goossens E, Budts W, Gewillig M, Moons P (2010) Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 106:1803–1807.  https://doi.org/10.1016/j.amjcard.2010.08.020 CrossRefPubMedGoogle Scholar
  31. 31.
    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.  https://doi.org/10.1177/1474515113479231 CrossRefPubMedGoogle Scholar
  32. 32.
    Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, Reiss J, Wood D (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.  https://doi.org/10.1093/jpepsy/jsp128 CrossRefPubMedGoogle Scholar
  33. 33.
    Clark NM, Dodge JA (1999) Exploring self-efficacy as a predictor of disease management. Health Educ Behav 26:72–89.  https://doi.org/10.1177/109019819902600107 CrossRefPubMedGoogle Scholar
  34. 34.
    Crowley R, Wolfe I, Lock K, McKee M (2011) Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 96:548–553.  https://doi.org/10.1136/adc.2010.202473 CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Viner R (1999) Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child 81:271–275.  https://doi.org/10.1136/adc.81.3.271 CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Goossens E, Bovijn L, Gewillig M, Budts W, Moons P (2016) Predictors of care gaps in adolescents with complex chronic condition transitioning to adulthood. Pediatrics 137(4):e 20152413.  https://doi.org/10.1542/peds.2015-2413 CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Adult Congenital Heart Disease GhentGhent University HospitalGhentBelgium
  2. 2.Center for Medical GeneticsGhent University HospitalGhentBelgium
  3. 3.Research Foundation Flanders (FWO)BrusselsBelgium
  4. 4.Department of Pediatric CardiologyGhent University HospitalGhentBelgium
  5. 5.Department of PsychologyGhent University HospitalGhentBelgium
  6. 6.Department of Public Health and Primary CareKU LeuvenLeuvenBelgium
  7. 7.Centre for Research and Innovation in Care (CRIC), Department of Nursing and Midwifery SciencesUniversity of AntwerpAntwerpBelgium

Personalised recommendations