ArticleJournal of the American Heart Association2021
Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being 2016-2019.
Article in Journal of the American Heart Association, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
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Who cites it
26 citing papers in PubMed.
- Health and Well-Being in Older Adults With a Surgically Closed or an Unrepaired Ventricular Septal Defect.Journal of the American Heart Association · 2023Trial
- Characteristics of children with congenital heart defects and their caregivers in three U.S. sites: the Congenital Heart Survey To Recognize Outcomes Needs and well-beinG of KIDS (CHSTRONG KIDS).Progress in pediatric cardiology · 2026Article
- Academic Achievements in Adolescents With Congenital Heart Disease: A Total Population-Based Cohort Study.Journal of the American Heart Association · 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
- Increased Risk of Disabilities in Children and Adolescents With Congenital Heart Disease of Any Severity.Journal of the American Heart Association · 2026Article
- Neurocognitive and Psychological Interventions for Adults With Congenital Heart Disease: A Consensus Statement From the Adult Congenital Heart Disease/Neuro 2024 Conference.Journal of the American Heart Association · 2026Article
- Birth-related characteristics predict vision-related quality of life in adults: A population-based study.PloS one · 2026Article
- Prevalence of congenital heart defects among children with and without diagnosed fetal alcohol spectrum disorders, 2016-2022.Drug and alcohol dependence · 2025Article
- Educational Attainment and Employment Status of Adults Living With Congenital Heart Disease in the United States, CH STRONG 2016-2019.Birth defects research · 2025Article
- Public Awareness and Perceptions of Congenital Disabilities in Saudi Arabia: A Cross-Sectional Study.Risk management and healthcare policy · 2025Article
- Hybrid approach: a prospective option for treating congenital heart defects in pediatric patients.Frontiers in cardiovascular medicine · 2025Review
- Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience.American heart journal · 2024Article
- Psychiatric morbidity and work participation in patients with congenital ventricular septal defects: a case-controlled study.European heart journal. Quality of care & clinical outcomes · 2024Article
- ENU-based dominant genetic screen identifies contractile and neuronal gene mutations in congenital heart disease.Genome medicine · 2024Article
- Health Insurance Status and Access to Healthcare Among Young Adults with Congenital Heart Disease: from the Congenital Heart Survey To Recognize Outcomes, Needs and Well-beinG (CH STRONG), 2016-2019.Pediatric cardiology · 2024Article
- Incidence and Antenatal Detection of Congenital Heart Malformations-Data from a Tertiary Obstetric Romanian Center.Diagnostics (Basel, Switzerland) · 2024Article
- Health Equity and Policy Considerations for Pediatric and Adult Congenital Heart Disease Care among Minoritized Populations in the United States.Journal of cardiovascular development and disease · 2024Review
- Neighborhood social deprivation and healthcare utilization, disability, and comorbidities among young adults with congenital heart defects: Congenital heart survey to recognize outcomes, needs, and well-being 2016-2019.Birth defects research · 2023Article
- Survival From Birth Until Young Adulthood Among Individuals With Congenital Heart Defects: CH STRONG.Circulation · 2023Article
- Healthcare and Socioeconomic Outcomes Among Young Adults With Congenital Heart Defects and Functional Cognitive Disabilities, CH STRONG 2016 to 2019.The American journal of cardiology · 2023Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background Disabilities have implications for health, well-being, and health care, yet limited information is available on the percentage of adults with congenital heart defects (CHD) living with disabilities. We evaluated the prevalence of disability and associated characteristics among the 2016-2019 CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being) population-based sample of 19- to 38-year-olds with CHD from 3 US locations. Methods and Results Prevalence of disability types (hearing, vision, cognition, mobility, self-care, living independently) were compared with similarly aged adults from the general population as estimated by the American Community Survey and standardized to the CH STRONG eligible population to reduce nonresponse bias and confounding. Health-related quality of life (HRQOL) was measured via Patient-Reported Outcomes Measurement Information System Global Health Scale T-scores standardized to US 18- to 34-year-olds. Separate multivariable regression models assessed associations between disability and HRQOL. Of 1478 participants, 40% reported disabilities, with cognition most prevalent (29%). Of those reporting disability, 45% ever received disability benefits and 46% were unemployed. Prevalence of disability types were 5 to 8 times higher in adults with CHD than the general population. Those with ≥1 disability had greater odds of being female, and of having non-Hispanic Black maternal race and ethnicity, severe CHD, recent cardiac care, and noncardiac congenital anomalies. On average, adults with CHD and cognition, mobility, and self-care disabilities had impaired mental HRQOL and those with any disability type had impaired physical HRQOL. Conclusions Two of 5 adults with CHD may have disabilities, which are associated with impaired HRQOL. These results may inform healthcare needs and services for this growing population.
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