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

Daan Ties, Tajinder K Singh, Xin Zhang, Dennis van Veghel, Inge Schalkers, Hilde E Groot, Paul F M Krabbe, Pim van der Harst*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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-centered preference-based PROM to assess and monitor HRQoL in CVD patients.

METHODS AND RESULTS: A mixed-method study consisting of several phases was conducted to identify important health items: (1) a scoping literature review, (2) first and second-round expert group meetings, (3) interviews with CVD patients, and (4) an online survey asking CVD patients to indicate from a large set those health items that are considered 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 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 most important for health by CVD patients were identified and included in a new preference-based patient-centered 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.

Original languageEnglish
Number of pages20
JournalEuropean heart journal. Quality of care & clinical outcomes
Issue number7
Early online date8-Nov-2021
Publication statusPublished - Nov-2022


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