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

作者：Daan Ties, Tajinder K Singh, Xin Zhang, Dennis van Veghel, Inge Schalkers, Hilde E. Groot, Paul F. M. Krabbe, Pim van der Harst · 发表于：European Heart Journal - Quality of Care and Clinical Outcomes · 年份：2021 · DOI：10.1093/ehjqcco/qcab079 · 被引用次数：9 · 研究领域：Cardiac Health and Mental Health、Cardiovascular Health and Risk Factors、Health Systems, Economic Evaluations, Quality of Life

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-...