The role of illness uncertainty in the relationship between disease knowledge and patient-reported outcomes among adolescents and adults with congenital heart disease

Greater general disease knowledge predicts better patient-reported outcomes (PROs) among congenital heart disease (CHD) survivors, but higher illness uncertainty is associated with elevated emotional distress and poorer well-being among patients with chronic disease. This study explored the relationship of illness uncertainty and disease knowledge with emotional distress and health-related quality of life (HRQoL) among patients with CHD. Individuals with CHD (N = 169, ages 15–39) completed self-report measures of disease knowledge (general and risk-related), illness uncertainty, depressive and anxiety symptoms, and HRQoL. Pearson correlations and regressions analyses were utilized. Greater risk-related knowledge was associated with greater anxiety (b = .41, p = .03, 95% CI = [.04, .77]) and poorer emotional HRQoL (b = -.53, p = .03, 95% CI = [-1.02, -.05]) when illness uncertainty was higher. When individuals with CHD feel uncertain about their disease course and outcomes, knowledge about future cardiovascular risks may result in higher levels of distress.