TY - JOUR
T1 - Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics? A systematic review
T2 - A systematic review
AU - van Pottelberghe, Saar
AU - Kupper, Nina
AU - Scheirlynck, Esther
AU - Amin, Ahmad S.
AU - Wilde, Arthur A. M.
AU - Hofman, Nynke
AU - Callus, Edward
AU - Biller, Ruth
AU - Nekkebroeck, Julie
AU - van Dooren, Sonia
AU - Hes, Frederik J.
AU - van der Crabben, Saskia N.
N1 - Funding Information: SVP was supported by the Innoviris Brussels Region BRIDGE grant IGenCare. (Grant number: BRGIMP12: https://researchportal.vub.be/en/projects/bridge-igencare-integrated-personalised-medical-genomics-care-sol ). Publisher Copyright: © 2023, The Author(s).
PY - 2023/12/14
Y1 - 2023/12/14
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85179750644&origin=inward
U2 - https://doi.org/10.1038/s41431-023-01510-w
DO - https://doi.org/10.1038/s41431-023-01510-w
M3 - Article
C2 - 38097768
SN - 1018-4813
JO - European journal of human genetics
JF - European journal of human genetics
ER -