ArticleAmerican heart journal2026
Understanding gaps in guideline-recommended adult congenital heart disease care: Data from 12 US health care centers.
Article in American heart journal, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
1 citing paper in PubMed.
- Digital Health Intervention to Promote Lifelong Specialized Care in Adults With Congenital Heart Disease: Theory-Driven Community Co-Designed Study.Journal of medical Internet research · 2026Article
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24 authors.
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Abstract
backgroundGuidelines recommend lifelong care with adult congenital heart disease (ACHD) specialists for adults with congenital heart disease (CHD). However, such gaps in visits at specialized ACHD centers have not been well-characterized from diverse US settings.
methodsThis retrospective study analyzed data from 12 centers in the national Patient-Centered Clinical Research Network. CHD conditions were classified using International Classification of Disease codes and a hierarchical algorithm. ACHD specialists were identified by investigators and encounter volumes. Data from the 'Pre-COVID' (2015-2019) and 'COVID' (2020-2022) periods were analyzed separately. Main outcome measures were: 1) Gaps in any ACHD specialist visit and recommended testing throughout the study period. 2) Gaps in recommended ACHD follow-up care.
resultsDuring pre-COVID (N = 18,934) and COVID (N = 22,453) periods, between 55.3%-55.8% were males, 27.2%-31.0% were 40+ years, 18.2%-19.6% had severe CHD, and 52.7%-55.0% had CHD physiologic class B-D conditions. Between 47.0%-54.5% had gaps in specialist visit and 13.0%-24.6% had gaps in all the testing. Patients with gaps in specialist visits were 6.33-9.44 times more likely to have gaps in testing. Gaps were more common among patients with moderate (adjusted odds ratio [AOR]: 2.61) and simple (AOR: 2.84) CHD, those aged 40+ (AOR: 1.53) and nonphysiologic class conditions (AOR 1.51). In both periods, 64.1%-71.5% of patients had gaps in follow-up care.
conclusionsThree-quarters of adults with CHD experienced gaps in specialized ACHD care while receiving services at high volume comprehensive tertiary health centers. To address these gaps, interventions such as fostering physician collaboration within tertiary centers might be needed, and targeted to patients with less severe CHD, nonphysiologic class conditions, and those aged 40+ years.
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