What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease

Abstract

Aims Patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQoL) are increasingly used to guide decision-making in cardiovascular care. However, many of the existing PROMs are developed with limited patient involvement and overlook personal health preferences. We aim to develop a cardiovascular disease (CVD)-specific patient-centred preference-based PROM to assess and monitor HRQoL in CVD patients. Methods and results A mixed-methods study consisting of several phases was conducted to identify important health items: (i) a scoping literature review, (ii) first- and second-round expert group meetings, (iii) interviews with CVD patients, and (iv) an online survey asking CVD patients to indicate from a large set those health items that are considered the most important. The literature review, expert group meetings, and patient interviews resulted in a list of 55 items potentially important to CVD patients. In total, 666 CVD patients responded to the survey. The following nine items were considered the most important by CVD patients: mobility, activities, self-reliance, fatigue, shortness of breath, chest pain, palpitations, anxiety/worrying, and sexual limitations. An electronic preference-based PROM consisting of these nine items was developed within a cloud-based environment for clinical implementation. Conclusion Nine items considered the most important for health by CVD patients were identified and included in a new preference-based patient-centred PROM. This new CVD-specific PROM can be easily implemented using the electronic application and has the potential to improve quality of care for CVD patients.