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

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.