ArticleResearch and practice in thrombosis and haemostasis2026
Psychometric properties and outcomes of the PROMIS Sexual Function and Satisfaction measures in individuals with congenital bleeding disorders.
Article in Research and practice in thrombosis and haemostasis, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Sexual function can be negatively affected in individuals with congenital bleeding disorders (CBDs). Patient-reported outcome measures can provide insight into patients' experiences and help address sexual function and sexual satisfaction in clinical care. Objectives: This study evaluates the measurement properties of a selection of PROMIS Sexual Function and Satisfaction (PROMIS SexFS) measures in adults with CBDs and describes the outcomes. Methods: In this cross-sectional multicenter study, men with hemophilia and women with hemophilia or von Willebrand disease were invited to participate. Six screener items, 12 measures from the PROMIS SexFS, and disease-specific items on sexual function and satisfaction were completed. Reliability was evaluated using standard error of T-scores. Internal consistency was evaluated using item-total correlation. Known-group validity was examined by testing predefined hypotheses. Feasibility was evaluated using percentage of lowest and highest scores, and relevance was evaluated qualitatively. Lastly, PROMIS T-scores were compared with reference data from the Dutch general population using independent samples Results: Data from 231 patients (mean age 44 years, range 18-81 years; 54% male) were collected. For all measures, >78% met the reliability criterion. Internal consistency and feasibility were sufficient, and known-group validity was supported. Compared with reference data, patients reported greater orgasm pleasure (d = 0.23) and more interest in sexual activity (d = 0.19). Males reported better erectile function (d = 0.26), while females reported more vaginal discomfort with sexual activity (d = 0.48). Conclusion: The Dutch PROMIS SexFS measures showed sufficient reliability and validity for assessing sexual function and satisfaction in individuals with CBDs. It can inform research and support clinical discussions.
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