ArticleHaemophilia : the official journal of the World Federation of Hemophilia
Health-Related Quality of Life in Adult Patients With von Willebrand Disease From Germany: Results of the WIL-QoL Study.
Article in Haemophilia : the official journal of the World Federation of Hemophilia. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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3 citing papers in PubMed.
- Race, Ethnicity, and Hemophilia: A Scoping Review.Journal of racial and ethnic health disparities · 2026Review
- Health-related quality of life in adults with von Willebrand disease: results of the French real-life Willebrand study on health-related quality of life.Research and practice in thrombosis and haemostasis · 2026Article
- Health-Related Quality of Life in Adult Patients With von Willebrand Disease From Germany: Results of the WIL-QoL Study.Haemophilia : the official journal of the World Federation of HemophiliaArticle
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10 authors.
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Abstract
introductionAssessment of health-related quality of life (HRQoL) is relatively new in von Willebrand disease (VWD). So far, generic questionnaires have mainly been used for HRQoL assessment in VWD.
aimsTo assess generic and disease-specific HRQoL in adult VWD patients and compare HRQoL with the general German population.
methodsPatients presenting with a personal or family history of bleeding and von Willebrand factor (VWF)-specific laboratory parameters were enrolled in the WIL-QoL study. HRQoL was assessed with generic (SF-36) and disease-specific (VWD-QoL) questionnaires. Descriptive and inferential statistical procedures were applied based on a significance level at α ≤ 5%.
resultsIn the retrospective, multicentre WIL-QoL study, HRQoL and clinical data in 120 adults with VWD (one adolescent completed the adult questionnaire) from 10 centres in Germany were collected. Compared to the corresponding age group in the general German population, female VWD patients had significantly worse HRQoL in all SF-36 domains and male patients only in the 'physical functioning' domain. In the VWD-QoL, highest impairments were seen in all VWD patients in the domains 'other physicians', 'treatment' and 'sport & leisure'. VWD patients with a more significant disease burden, such as a bleeding score ≥ 9 (p < 0.0001), long-term prophylaxis (p = 0.003), and VWD-type 3 (p = 0.022), reported significantly worse HRQoL. No HRQoL differences were seen between male and female VWD patients.
conclusionFemale VWD patients showed significant impairments in their HRQoL compared to the age group-related general population. Compared to SF-36, the VWD-QoL identified stronger significant HRQoL differences in most VWD subgroups, confirming the impact of bleeds.
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