OBJECTIVE: To evaluate heart failure (HF) patients' disease knowledge and preferences for avoiding different disease outcomes.
METHODS: An online survey was administered to 400 individuals with a self-reported diagnosis of HF to elicit relative importance weights (RIWs) for avoiding 11 potential HF symptoms and outcomes using best-worst scaling. The survey also included questions about individuals' HF knowledge, and demographic and disease-experience characteristics. Differences in RIWs among subgroups, defined by HF knowledge, caregiver support, age, recent hospitalization or emergency room visit for HF, health-related quality of life, and cardiac device experience were examined.
RESULTS: Relative to limitations in usual activities (RIW 1.00), respondents preferred avoiding severe, infrequent cardiovascular events (e.g., stroke [RIW 8.51], heart transplant [RIW 7.84], or heart attack [RIW 5.3]) most, followed by difficulty breathing (RIW 2.55), inability to enjoy life (RIW 1.84), cardiac device implantation (RIW 1.74), and atrial fibrillation (RIW 1.57). Patients preferred avoiding swelling (RIW 0.47) and fatigue (RIW 0.58) least. RIWs for avoiding severe, infrequent events were higher among those with high disease knowledge, those without caregivers, and those without a recent hospitalization or emergency room visit.
CONCLUSIONS: Patients' preferences for avoiding HF outcomes vary across outcomes and by individuals' knowledge, caregiver status, and age. Health care providers should solicit and incorporate insights about patients' knowledge of HF and their preference for avoiding HF outcomes into HF education and management planning efforts.