Hostname: page-component-5c6d5d7d68-thh2z Total loading time: 0 Render date: 2024-08-15T13:58:17.086Z Has data issue: false hasContentIssue false
  • English
  • Français

A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

Published online by Cambridge University Press:  13 April 2020

Stephanie S. Gaydos Open the ORCID record for Stephanie S. Gaydos [Opens in a new window] ,
Shahryar M. Chowdhury Open the ORCID record for Shahryar M. Chowdhury [Opens in a new window] ,
Rochelle N. Judd  and
Kimberly E. McHugh
Stephanie S. Gaydos*
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Shahryar M. Chowdhury
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Rochelle N. Judd
Affiliation:
Division of Cardiology, Department of Medicine, Medical University of South Carolina, Charleston, SC, USA
Kimberly E. McHugh
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
*
Author for correspondence: S. S. Gaydos, Division of Pediatric Cardiology, Department of Pediatrics, Medical University of South Carolina, Shawn Jenkins Children’s Hospital, 10 McClellan Banks Drive, MSC 915 Charleston, SC29425, USA. Tel: +843-792-3286; Fax: +843-792-3284. E-mail gaydoss@musc.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Children with congenital heart disease (CHD) require lifelong cardiology follow-up. Many experience gaps in care around the age of transition to adult-oriented care with associated comorbidity. We describe the impact of a clinic-based intervention on follow-up rates in this high-risk population.

Methods:

Patients ≥11 years seen in a paediatric outpatient CHD Transition Clinic completed self-assessment questionnaires, underwent focused teaching, and were followed on a clinic registry with assessment of care continuation. The cohort “lost to follow-up” rate, defined as absence from care at least 6 months beyond the recommended timeframe, was compared with a control group. Secondary outcomes included questionnaire scores and adult cardiology referral trends.

Results:

Over 26 months, 53 participants completed an initial Transition Clinic visit; 43% (23/53) underwent a second visit. Median participant age was 18.0 years (interquartile range 16.0, 22.0). The cohort’s “lost to follow-up” rate was 7.3%, which was significantly lower than the control rate (25.9%, p < 0.01). Multivariable regression analyses demonstrated clinic participation as the only factor independently associated with follow-up rates (p = 0.048). Transition readiness was associated with older age (p = 0.01) but not sex, univentricular heart, interventional history, or surgical complexity. One-third of adult participants transferred to adult care.

Conclusions:

A CHD Transition Clinic intervention can improve follow-up rates in adolescents and young adults. Age is an important factor in transition readiness, and retention of adults in paediatric care appears multi-factorial. We postulate that serial assessments of self-management, focused education, and registry utilisation may improve patient outcomes by reducing lapses in care.

Keywords

Congenital cardiologytransitionfollow-up care
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 5 , May 2020 , pp. 633 - 640
Copyright
© The Author(s) 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Hoffman, JI, Kaplan, S, Liberthson, RR. Prevalence of congenital heart disease. Am Heart J 2004; 147(3): 425–439.CrossRefGoogle ScholarPubMed
Warnes, CA, Liberthson, R, Danielson, GK, et al.Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37(5): 1170–1175.10.1016/S0735-1097(01)01272-4CrossRefGoogle ScholarPubMed
Mackie, AS, Ionescu-Ittu, R, Therrien, J, et al.Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 2009; 120(4): 302–309.CrossRefGoogle ScholarPubMed
Yeung, E, Kay, J, Roosevelt, GE, et al.Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125(1): 62–65.10.1016/j.ijcard.2007.02.023CrossRefGoogle Scholar
Gurvitz, M, Valente, AM, Broberg, C, 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 2013; 61(21): 2180–2184.CrossRefGoogle Scholar
Wacker, A, Kaemmerer, H, Hollweck, R, et al.Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 2005; 95(6): 776–779.CrossRefGoogle ScholarPubMed
de Bono, J, Freeman, LJ. Aortic coarctation repair-- lost and found: the role of local long term specialised care. International Journal of Cardiology 2005; 104(2): 176–183.CrossRefGoogle ScholarPubMed
Gurvitz, MZ, Inkelas, M, Lee, M, et al.Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 2007; 49(8): 875–882.10.1016/j.jacc.2006.09.051CrossRefGoogle Scholar
Sable, C, Foster, E, Uzark, K, 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 2011; 123(13): 1454–1485.CrossRefGoogle ScholarPubMed
Health, T.N.A.t.A.A. Got Transition. 2004; Available from: https://www.gottransition.org/index.cfmGoogle Scholar
Mackie, AS, Islam, S, Magill-Evans, J, et al.Healthcare transition for youth with heart disease: a clinical trial. Heart 2014; 100(14): 1113–1118.CrossRefGoogle ScholarPubMed
Wood, DL, Sawicki, GS, Miller, MD, et al.The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr 2014; 14(4): 415–422.CrossRefGoogle ScholarPubMed
Sawicki, GS, Lukens-Bull, K, Yin, X, et al.Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. J Pediatr Psychol 2011; 36(2): 160–171.10.1093/jpepsy/jsp128CrossRefGoogle ScholarPubMed
Uzark, K, Jones, K, Burwinkle, TM, Varni, JW. The Pediatric Quality of Life Inventory in children with heart disease. Progress in Pediatric Cardiology 2003; 18(2): 141–149.10.1016/S1058-9813(03)00087-0CrossRefGoogle Scholar
Ladouceur, M, Calderon, J, Traore, M, Cheurfi, R, Pagnon, C, Khraiche, D, Bajolle, F, Bonnet, D. Educational needs of adolescents with congenital heart disease: Impact of a transition inervention programme. Archives of Cardiovascular Diseases 2017; 110(5): 317–324.CrossRefGoogle Scholar
Valente, AM, Landzberg, MJ, Gianola, A, 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 2013; 168(4): 3236–3240.CrossRefGoogle Scholar
Goossens, E, Fieuws, S, Van Deyk, K, et al.Effectiveness of structured education on knowledge and health behaviors in patients with congenital heart disease. J Pediatr 2015; 166(6): 1370–6.e1.CrossRefGoogle ScholarPubMed
Acuña Mora, M, Sparud-Lundin, C, Bratt, E-L, Moons, P. 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 2017; 7(4).CrossRefGoogle Scholar
Huang, JS, Terrones, L, Tompane, T, et al.Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics 2014; 133(6): e1639–1646.10.1542/peds.2013-2830CrossRefGoogle ScholarPubMed
Mackie, AS, Rempel, GR, Kovacs, AH, et al.Transition intervention for adolescents with congenital heart disease. J Am Coll Cardiol 2018; 71(16): 1768–1777.CrossRefGoogle ScholarPubMed
Goossens, E, Stephani, I, Hilderson, D, 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 2011; 57(23): 2368–2374.CrossRefGoogle ScholarPubMed
Fernandes, SM, Khairy, P, Fishman, L, 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 2012; 60(23): 2411–2418.CrossRefGoogle ScholarPubMed
Marino, BS, Lipkin, PH, Newburger, JW, et al.Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126(9): 1143–1172.CrossRefGoogle ScholarPubMed
Gaynor, JW, Stopp, C, Wypij, D, et al.Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics 2015; 135(5): 816–825.10.1542/peds.2014-3825CrossRefGoogle ScholarPubMed
Ilardi, D, Ono, KE, McCartney, R, et al.Neurocognitive functioning in adults with congenital heart disease. Congenit Heart Dis 2017; 12(2): 166–173.10.1111/chd.12434CrossRefGoogle ScholarPubMed
Oster, ME, Watkins, S, Hill, KD, et al.Academic outcomes in children with congenital heart defects: a population-based cohort study. Circ Cardiovasc Qual Outcomes 2017; 10(2): p. e003074.CrossRefGoogle ScholarPubMed
Zomer, AC, Vaartjes, I, Uiterwaal, CS, et al.Social burden and lifestyle in adults with congenital heart disease. Am J Cardiol 2012; 109(11): 1657–1663.CrossRefGoogle ScholarPubMed
Karsenty, C, Maury, P, Blot-Souletie, N, et al.The medical history of adults with complex congenital heart disease affects their social development and professional activity. Arch Cardiovasc Dis 2015; 108(11): 589–597.CrossRefGoogle ScholarPubMed
Lee, A, Bailey, B, Cullen-Dean, G, et al.Transition of care in congenital heart disease: ensuring the proper handoff. Curr Cardiol Rep 2017; 19(6): 55.CrossRefGoogle ScholarPubMed
Heery, E, Sheehan, AM, While, AE, et al.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; 10(5): 413–427.CrossRefGoogle ScholarPubMed
Gurvitz, M, Saidi, A. Transition in congenital heart disease: it takes a village. Heart 2014; 100(14): 1075–1076.CrossRefGoogle Scholar