Measuring health-related quality of life in cardiovascular disease using a novel patient-centred and disease-specific patient-reported outcome measure

Abstract

Background: Assessment of health-related quality of life (HRQoL) in patients with cardiovascular disease (CVD) is impaired by limitations of current patient-reported outcome measures (PROMs). We developed the first cardiovascular disease (CVD) specific electronic PROM for which health items were derived by a fully patient-centered method. This paper reports on the measurement of HRQoL in CVD patients by a novel developed electronic patient-centred PROM based on a preference-based measurement model. Methods and results: In an earlier patient-based study nine health items were selected as most important to CVD patients. These items were assessed in the novel preference-based PROM of this study. CVD patients registered with a Dutch patient organization were asked to rate their health state. We compared HRQoL between subgroups of age, gender and CVD. A total of 554 patients participated in this study. The patient reported health items “worry”, “self-reliance” and “sexuality” had the highest impact on HRQoL of CVD patients. Median HRQoL was better for men compared to woman (−17.04, IQR: 31.47 to −3.91 vs. −25.22; IQR: 42.06 to −9.53, p = 0.003). Best and worst HRQoL were observed in patients with an unknown or other CVD disease (−15.61, IQR: 28.52 to −3.91) followed by individuals with coronary artery disease (−16.99, IQR: 38.08 - 0.00) and heart failure (−24.27, IQR: 42.64 to −12.98). Conclusions: This novel patient-centred, preference-based, CVD-specific PROM accurately measures HRQoL by taking individual health preferences into account and tackling limitations of current PROMs. This PROM is therefore promising to evaluate interventions and optimize personalized therapies.

Keywords

• Health-related quality of life
• Health status
• Patient-reported outcome measure
• Preference-based
• Cardiovascular disease
• Quality of care