Trial reportJournal of the American College of Cardiology2013
Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial).
Trial report in Journal of the American College of Cardiology, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05518136 (APP Rehabilitation Management and Evaluations of Cardiopulmonary Function and Motor Development in Infants With Congenital Heart Disease), which is not on this map. Cited by 114 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
APP Rehabilitation Management and Evaluations of Cardiopulmonary Function and Motor Development in Infants With Congenital Heart Disease: a Pilot Study
Who cites it
114 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components.BMC health services research · 2021Pooled it
- Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis.Journal of the American Heart Association · 2021Pooled it
- Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare.Journal of pediatric nursingPooled it
- Article
- Expanding Access to Specialized Adult Congenital Heart Disease Care Using a Hub-and-Spoke Model of Care.JACC. Case reports · 2026Article
- Racial and Ethnic Differences in Healthcare Access and Utilization Among Adults With Congenital Heart Defects in the Congenital Heart Survey to Recognize Outcomes, Needs and Well-Being (CH STRONG).Birth defects research · 2026Article
- Beyond survival: empowering adults with congenital heart disease through communication and co-designed education.Journal of thoracic disease · 2026Review
- 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
- Design and Implementation of My Health, My Heart: A Pilot Healthcare Transition Program for Adolescents with Congenital Heart Disease.Pediatric cardiology · 2026Article
- Health Care Utilization in Adults With Congenital Heart Disease: Population-Based Findings.Birth defects research · 2026Article
- Article
- Review
- Sociodemographic and Clinical Predictors of Mortality in Adults With Congenital Heart Disease.Journal of the American Heart Association · 2026Article
- Bridging communication gaps to improve adult congenital heart disease care: patient perspectives from a qualitative study.BMC health services research · 2026Article
- Spectrum of Congenital Heart Diseases in Iraqi Patients.The Eurasian journal of medicine · 2026Article
- Understanding gaps in guideline-recommended adult congenital heart disease care: Data from 12 US health care centers.American heart journal · 2026Article
- Transition from Paediatric to Adult Care in Congenital Heart Disease: A Call for Action.Journal of clinical medicine · 2025Review
- [Initial care and stabilization of ACHD patients : Teamwork improves outcomes].Medizinische Klinik, Intensivmedizin und Notfallmedizin · 2025Review
- Article
- Transition from pediatric to adult cardiology care in congenital heart disease: contemporary considerations.European journal of pediatrics · 2025Review
54 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
19 authors.
Funding
Abstract
objectivesThe goal of this project was to quantify the prevalence of gaps in cardiology care, identify predictors of gaps, and assess barriers to care among adult congenital heart disease (adult CHD) patients.
backgroundAdult CHD patients risk interruptions in care that are associated with undesired outcomes.
methodsPatients (18 years of age and older) with their first presentation to an adult CHD clinic completed a survey regarding gaps in, and barriers to, care.
resultsAmong 12 adult CHD centers, 922 subjects (54% female) were recruited. A >3-year gap in cardiology care was identified in 42%, with 8% having gaps longer than a decade. Mean age at the first gap was 19.9 years. The majority of respondents had more than high school education and knew their heart condition. The most common reasons for gaps included feeling well, being unaware that follow-up was required, and complete absence from medical care. Disease complexity was predictive of a gap in care with 59% of mild, 42% of moderate, and 26% of severe disease subjects reporting gaps (p < 0.0001). Clinic location significantly predicted gaps (p < 0.0001), whereas sex, race, and education level did not. Common reasons for returning to care were new symptoms, referral from provider, and desire to prevent problems.
conclusionsAdult CHD patients have gaps in cardiology care; the first lapse commonly occurred at age ∼19 years, a time when transition to adult services is contemplated. Gaps were more common among subjects with mild and moderate diagnoses and at particular locations. These results provide a framework for developing strategies to decrease gaps and address barriers to care in the adult CHD population.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.