Measuring quality of life in cardiovascular diseases: findings from a scoping review on the use and relevance of patient-reported outcomes

Background Patient-reported outcome and experiences measures (PROMs and PREMs) provide critical insights into physical, psychological, and social dimensions of health, offering a holistic understanding of healthcare quality. These tools are valuable in cardiovascular disease (CVD) care, where addressing individual preferences can enhance treatment outcomes and quality of life (QoL). Purpose As part of a broader EU initiative, this scoping review aims to identify and analyse the use and relevance of PROMs and PREMs in CVD care, focusing on QoL measurements. This evidence has the potential to support the EU initiative improving patient-centred outcomes, designing tailored interventions and integrating personalised care strategies into clinical practice. Together, these efforts aim to improve health outcomes for people with CVD. Methods The PICO-based PubMed search included terms for CVD, PROMS and PREMs, synonyms, and abbreviations. Peer-reviewed articles and reviews published before April 2024 in English, German, Dutch, French and Italian were included. Strict inclusion and exclusion criteria were applied. Articles focusing on different CVDs, i.e. ischaemic heart disease, cardiomyopathy, cardiac arrythmia and heart failure (HF) were eligible, excluding CVDs due to neurological complications, birth defects and peripheral artery disease. Only validated PROMs were considered. Summarization, analysis and evaluation of full texts are based on qualitative content analysis. Results 879 of 5,489 articles were screened for full text from which 390 were included in the analysis. 211 studies (68%) measured QoL. Observational studies were most common (47%), followed by RCTs (25%) and psychometric evaluations (6%). Most studies focused on HF (57%). 8 generic and 17 disease-specific instruments were identified. The EQ-5D was the most frequently used generic questionnaire (74%). Among disease-specific questionnaires, Kansas City Cardiomyopathy Questionnaire (KCCQ) dominated (46%), followed by Minnesota Living with Heart Failure Questionnaire (MLHF; 16%) and HeartQoL (12%). Although KCCQ and HeartQoL are developed to measure QoL in chronic HF, they are used across other CVDs. The MLHF is rarely used in other CVDs (see Figure 1). QoL measurement rose from 2014, peaking in 2020-2023. KCCQ use peaked in 2019, followed by a temporary decline in EQ-5D use, which increased rapidly in subsequent years, reaching the same level of use as KCCQ by 2021 (see Figure 2). In contrast, MLHF was not as widely used. Conclusion These findings indicate a growing preference for disease-specific QoL tools but also highlight variability in measurement approaches across different CVDs. Future studies should explore whether these PROMs truly capture patients' priorities and experiences, and how their use can be standardized across CVD care to enhance clinical decision-making. The EU initiative will address this by discussing PROMs with patients.Disease-specific questionnaires Measurement instruments