Are Disease-Specific Patient-Reported Outcomes Measures (PROMs) Used in Cardio Genetics? A Review

Saar Van Pottelberghe, Nina Kupper, Esther Scheirlynck, Edward Callus, A.S. Amin, Arthur A. M. Wilde, Ruth Biller, Julie Nekkebroeck, Sonia Van Dooren, Frederik Jan Hes, Saskia N. van der Crabben

Onderzoeksoutput: Meeting abstract (Journal)


Background: Besides hard medical outcomes in patients with inherited cardiac conditions (ICC). it is crucial to focus on the patient-reported outcomes (PRO) as well. These patients may have a disease-specific need due to ICC-related distress concerning family members and reproductive choices. We evaluated which PRO scales are currently used in cardiogenetics.

Methods: From three datasets (PubMed, PsychINFO, and Web of Science), eligible studies published between 2008-2022 were selected as described in the review protocol (PROSPERO 2021 CRD42021271384). The quality of studies was assessed ( ) and analyzed for the primary outcome variable of patient-reported outcomes.

Results: Eighteen out of 232 articles were selected for data extraction; 9 studies used a cross-sectional design, and population characteristics and outcome measures varied. The risk of bias was high or unclear in 77% of the studies. All studies mainly used two questionnaires in combination or alone: the short form of medical outcomes survey (SF-36), a generic PROM that reports on health status and the Hospital Anxiety and Depression Scale (HADS), a standard measure of psychological well-being. Thirteen studies using SF-36 showed lower scores on the mental health component in patients with ICC versus population norms. Ten studies using HADS showed a prevalence of clinically significant anxiety (17-47%) and depression (8.3% to 28%) which are higher than the population norm (8.3% and 6.3%).

Conclusion: Our results from only a few published studies indicate that although psychological morbidity in ICC patients is high, measurements are non-specific, variable, and generic and address overall health, instead of addressing factors specific to ICC, such as heritability. We propose to develop a disease-specific PROM for cardiogenetics to evaluate the heritability factor in patients with ICC to implement in the care pathway and optimize patient-centred care.
Originele taal-2English
Pagina's (van-tot)1-1
Aantal pagina's1
Nummer van het tijdschriftSuppl_1
StatusPublished - 30 okt 2022


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