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

Background: 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. Objectives: 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. Methods: 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. Results: 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% Cl = [-1.02, -.05]) when illness uncertainty was higher. Conclusion: When individuals with CHD feel uncertain about their disease course and outcomes, knowledge about future cardiovascular risks may result in higher levels of distress. (C) 2018 Elsevier Inc. All rights reserved.