Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience
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, James St. Louis, Lazaros KochilasAbstract
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%, p < 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.