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

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: < 0.001) but was mixed for other outcomes. CONCLUSIONS: Improving a person's knowledge of their CHD may be an effective strategy for maintaining continuity of care.