Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience.

Creator(s)

• Matthew E. Oster
• Kenneth Williams
• Kaivalya Gudooru
• Yanxu Yang
• Osama Aldoss
• Mansi Gaitonde
• Gurumurthy Hiremath
• Jeffrey Phillip Jacobs
• Anitha S. John
• Deborah Kozik
• Bradley Marino
• Kimberly McHugh
• Geetha Raghuveer, Children's Mercy HospitalFollow
• James St Louis
• Lazaros Kochilas

Document Type

Article

Publication Date

7-2026

Identifier

DOI: 10.1017/S1047951126111998; PMCID: PMC13424921

Abstract

BACKGROUND: Knowledge of one's defect is fundamental in optimising outcomes in adults with CHD. We aimed to assess factors associated with defect knowledge and how that knowledge may impact outcomes.

METHODS: We performed a cross-sectional cohort study of adults with CHDs aged 18-82 years with intervention between 1982 and 2003 at one of 11 US centres in the Pediatric Cardiac Care Consortium. Participants completed a survey in 2021-2023 regarding disease knowledge and various health and quality of life outcomes. After comparing participants' self-identification of their defect to that recorded in the medical record, we identified demographic factors associated with correct identification and assessed the association of correct identification with outcomes.

RESULTS: Among 2747 respondents with one of the 18 types of CHDs on the survey, 2271 (83%) correctly identified their defect. Those who correctly identified their defect were more likely to be non-Hispanic White (84% correct), were < 25 years of age (89%), have a higher level of education (86% for a bachelor's degree and 87% for a graduate degree), and have higher household income (85% for income ≥$60,000). Those with severe two-ventricle disease were most likely to correctly identify their defect (88% correct); those with moderate disease were least likely (80% correct). Correct identification was associated with seeing a cardiologist in the last 5 years (74% vs. 63%,

CONCLUSIONS: Improving a person's knowledge of their CHD may be an effective strategy for maintaining continuity of care.

Journal Title

Cardiology in the young

Volume

36

Issue

7

First Page

1428

Last Page

1435

MeSH Keywords

Humans; Female; Cross-Sectional Studies; Male; Adolescent; Adult; Aged, 80 and over; Quality of Life; Middle Aged; Young Adult; Aged; Heart Defects, Congenital; Survivors; Self Report; Health Knowledge, Attitudes, Practice; United States; Surveys and Questionnaires

PubMed ID

42466717

Keywords

CHD; healthcare literacy; long-term outcome; quality of life

Comments

Grants and funding

• R01 HL122392/HL/NHLBI NIH HHS/United States

Recommended Citation

Oster ME, Williams K, Gudooru K, et al. Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience. Cardiol Young. 2026;36(7):1428-1435. doi:10.1017/S1047951126111998