CaRe QoL Chronic Heart Failure: a care-specific QoL PROM based on patient’s perspective

Abstract

Background: Many PROMs exist measuring care-outcomes as perceived by patients to optimizing care. However, the outcomes measured are mainly determined by healthcare professionals. Moreover, measuring long-term care-outcomes often relies on QoL questionnaires that are not care-specific. We aimed to develop a PROM for chronic heart failure (CHF) starting from patient’s perspective. Methods: Mixed Methods using focusgroups exploring care-outcomes that are most important for people with chronic heart failure, using IPA for analysis; Literature review listing all relevant PROMs; Survey amongst 3,053 patients (RR 36%) validating the newly developed CaRe QoL CHF. Findings: Care-outcomes that mattered most to patients were ‘being part of society’, and ‘feeling watched over’. None of the existing PROMs fully met patient’s perspective. The CaRe QoL CHF proved valid and reliable. Conclusions: People with chronic heart failure found it hard to name care-outcomes directly related to the care received. However, they identified themselves with the new CaReQol CHF, especially since it was framed to the language they use. In order to properly measure patient outcomes these should fully incorporate patient’s perspective and use their language.