Lost Between Services: A Narrative Review of Loss to Follow-Up in the Transition from Paediatric to Adult Congenital Heart Care
DOI:
https://doi.org/10.5281/zenodo.22227597Keywords:
Congenital Heart Disease, Transition to Adult Care, Loss to Follow-Up, Continuity of Care, Adolescent HealthAbstract
Almost every child born with a heart defect now reaches adulthood, and almost every one of them needs cardiac review for the
rest of their life. A sizeable minority stop attending in their late teens, and many are not seen again until something goes wrong.
Objectives: To review the published evidence on discontinuity of cardiac follow-up around the transfer from paediatric to adult
congenital heart care: how many young people are lost, which of them, why, what it costs, and what has been shown to help.
Material and Methods: Narrative review of cohort studies, cross-sectional surveys, population registries, randomised trials and
society guidance indexed in PubMed and the major cardiology and paediatric journals. No new patient data were generated;
every estimate quoted is one published by the original investigators.
Results: Pooled across 17 studies and 6847 patients, 26.1 per cent of young people discontinued cardiac follow-up around the
transitional age, with individual estimates ranging from 3.6 to 62.7 per cent. Pooled discontinuity was 34.0 per cent in the United
States, 25.7 per cent in Canada and 6.5 per cent in Europe. In a survey of 922 adults attending a specialist clinic for the first time,
42 per cent reported a gap of more than three years and 8 per cent a gap of more than a decade, with the first lapse at a mean age
of 19.9 years. Gaps were commonest in the mildest disease. A nurse-led transition intervention made a timely first adult
appointment 1.8 times more likely at the recommended transfer point and 3.0 times more likely six months later.
Conclusion: Loss to follow-up is not random. It concentrates in young people who feel well, who were told their repair was a
success, and who were never given a reason to return. The interventions that work are administrative and relational rather than
technical, and the wide regional variation suggests how much of the problem is built into how services are organised.
Abbreviations: ACHD – Adult Congenital Heart Disease, CHD – Congenital Heart Disease, CI – Confidence Interval, HR –
Hazard Ratio, RCT – Randomised Controlled Trial.
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