Transition and Lifelong Follow-Up in Adult Congenital Heart Disease: Designing Services Around Attrition
DOI:
https://doi.org/10.5281/zenodo.22497629Abstract
Congenital heart disease (CHD) has become, over the past four decades, a survivable condition across the lifespan rather than
a childhood one: roughly 90% of infants born with a heart defect now live to reach adulthood [8]. That success has
created a population that did not previously exist in meaningful numbers -- adults whose repaired or palliated
hearts remain at risk of arrhythmia, heart failure, valve dysfunction, and reintervention decades after their original
surgery, and who therefore need lifelong, specialist follow-up rather than a discharge summary at eighteen. The clinical
problem this review addresses is not whether that follow-up matters -- guideline bodies on both sides of the Atlantic agree
that it does -- but how often it actually happens, and how much is genuinely known about which service design keeps patients
engaged.
References
Andrews JG, Strah D, Downing KF, et al. "Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG". Am J Cardiol 197(2023):42-45.
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 61(2013):2180-2184.
Dickson C, Osborn D, Baker D, Fethney J, Celermajer DS, Cordina R. "Loss to Specialized Cardiology Follow-Up in Adults Living with Congenital Heart Disease". Congenit Heart Dis 19(2024):49-63.
Moons P, Skogby S, Bratt EL, Zuhlke L, Marelli A, Goossens E. "Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis". J Am Heart Assoc 10(2021):e019552.
John AS, Jackson JL, Moons P, et al. "Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: A Practical Approach to Transition Program Design: A Scientific Statement From the American Heart Association". J Am Heart Assoc 11(2022):e025278.
Stout KK, Daniels CJ, Aboulhosn JA, et al. "2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines". Circulation 139(2019):e698-e800.
Gurvitz M, et al. "2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease". J Am Coll Cardiol (2025), Epub ahead of print.
Liu T, Jackson AC, Menahem S. "Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up?". World J Pediatr Congenit Heart Surg 14(2023):357-363.
