ArticleThe American journal of cardiology2023
Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG.
Article in The American journal of cardiology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
What it found
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Who cites it
9 citing papers in PubMed.
- Impact of prior congenital heart surgery on coronary artery bypass grafting outcomes in adults with congenital heart disease.Indian journal of thoracic and cardiovascular surgery · 2026Article
- 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
- 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
- Validation of the Perioperative Mortality Risk in Adults with Congenital Heart Disease (PEACH) Score in a US Cohort.Pediatric cardiology · 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
- Comorbidities and Healthcare Utilization Among Young Adults With Congenital Heart Defects by Down Syndrome Status-Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG, 2016-2019.Birth defects research · 2025Article
- Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience.American heart journal · 2024Article
- Access to Specialized Care Across the Lifespan in Tetralogy of Fallot.CJC pediatric and congenital heart disease · 2023Review
- Reproductive Health Counseling and Outcomes Among Women With Congenital Heart Defects: Results From the Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being, 2016-2019.Women's health issues : official publication of the Jacobs Institute of Women's HealthArticle
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
Many of the estimated 1.4 million adults with congenital heart defects (CHDs) in the United States are lost to follow-up (LTF) despite recommendations for ongoing cardiology care. Using 2016 to 2019 CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG) data, we describe cardiac care among community-based adults with CHD, born in 1980 to 1997, identified through state birth defects registries. Our estimates of LTF were standardized to the CH STRONG eligible population and likely more generalizable to adults with CHD than clinic-based data. Half of our sample were LTF and more than 45% had not received cardiology care in over 5 years. Of those who received care, only 1 in 3 saw an adult CHD physician at their last encounter. Not knowing they needed to see a cardiologist, being told they no longer needed cardiology care, and feeling "well" were the top reasons for LTF, and only half of respondents report doctors discussing the need for cardiac follow-up.
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Registered trials
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