Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis

Abstract

Background The majority of people born with congenital heart disease require lifelong cardiac follow-up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta-analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow-up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta-analysis of single proportions was performed according to the DerSimonian-Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%-34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%-58.3%), compared with moderate (25.7%; 95% CI, 15.2%-40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%-29.4%) (P=0.2372). Studies from the United States (34.0%; 95% CI, 24.3%-45.4%), Canada (25.7%; 95% CI, 17.0%-36.7%), and Europe (6.5%; 95% CI, 5.3%-7.9%) differed significantly (P=0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%-42.3%) compared with usual care (36.2%; 95% CI, 22.8%-52.2%) (P=0.1119). Conclusions This meta-analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero. Unique identifier: CRD42020182413.

Keywords: care gaps; continuity of care; heart defects, congenital; lapse of care; lost to follow‐up; meta‐analysis; systematic review.

Figure 1. PRISMA flowchart of article selection.

PRISMA indicates preferred reporting items for systematic reviews and meta‐analyses.

Figure 2. Graphical depiction of the inclusion of eligible patients (light blue) and the assessment of discontinuation of care (dark blue) in the 17 included studies.

ACHD indicates adult congenital heart disease; CHD, congenital heart disease; and PC, pediatric cardiology.

Figure 3. Forest plot for discontinuity of care in people with congenital heart disease at the transitional age.

Figure 4. Forest plots for discontinuity of care in people with congenital heart disease at the transitional age, by complexity of the heart defect.

Figure 5. Forest plots for discontinuity of care in people with congenital heart disease at the transitional age, by region of the study.

Figure 6. Forest plots for discontinuity of care in people with congenital heart disease following a transition program vs usual care.

Figure 7. Discontinuity of care in people with congenital heart disease at the transitional age, globally, by region of the study, by complexity, and by implementation of transition programs.