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Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics?: A systematic review
van Pottelberghe,S. Kupper,H.M. Scheirlynck,J. Amin,A.S. Wilde,A.A.M. Hofman,N. Callus,E. Biller,R. Nekkebroeck,J. van Dooren,S.
van Pottelberghe,S.
Kupper,H.M.
Scheirlynck,J.
Amin,A.S.
Wilde,A.A.M.
Hofman,N.
Callus,E.
Biller,R.
Nekkebroeck,J.
van Dooren,S.
Abstract
Patient-reported outcome measures (PROMs) are used to facilitate patient-centered care (PCC). While studies in patients with cardiac conditions have revealed poorer health-related quality of life (HRQoL) and elevated emotional stress, studies in inherited cardiac conditions (ICC) seem rare. A systematic review evaluated which (specific domains of) PROMs are used in patients with ICC. From three databases (PubMed, PsychINFO, and Web of Science) quantitative studies investigating PROMs in patients with ICC were included. A Cochrane-based assessment tool was used to evaluate quality and potential risk of bias per subdomain. Data from 17 eligible articles were extracted. Among the included studies, risk of bias was predominantly high (35%) or unclear (30%). Most (n = 14) studies used a generic health status measure (SF-36, SF-12); 3 studies used a disease-specific PROM (KCCQ- cardiomyopathy and MLFHQ-heart failure). In addition to HRQoL measures, several studies used affective psychological measures (i.e., HADS, CAQ-18, IES-R, and IPQ). The mental health component of the PROMs showed lower scores overall in patients with ICC compared to population norms. Nine studies using HADS and GAD-7/PHQ-9 showed a prevalence of clinically significant anxiety (17–47%) and depression levels (8.3–28%) that were higher than the population norm (8.3% and 6.3%, respectively). HRQoL in patients with ICC is primarily assessed with generic PROMs. Results further confirmed high psychological morbidity in this population. Generic PROMS measures evaluate overall health status, but lack sensitivity to ICC-specific factors like heredity-related concerns. We propose developing a PROM specific for ICC to optimize PCC.
Description
Date
2023
Journal Title
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Volume Title
Publisher
Research Projects
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Keywords
Care, Determinants, Health, Heart-failure, Hypertrophic cardiomyopathy, Impact, Long qt syndrome, Psychological distress, Quality-of-life
Citation
van Pottelberghe, S, Kupper, H M, Scheirlynck, J, Amin, A S, Wilde, A A M, Hofman, N, Callus, E, Biller, R, Nekkebroeck, J, van Dooren, S, Hes, F J & van der Crabben, S N C 2023, 'Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics? A systematic review', European Journal of Human Genetics, vol. 32, no. 6, pp. 607-618. https://doi.org/10.1038/s41431-023-01510-w