Clinical, Obstetric-Gynaecological and HRQoL Data of Female VWD Patients in the WIL-QoL Study

Authors: Halimeh, S; Wermes, C; Moorthi, C; Fischer, R; Heller, C; Miesbach, W; Schilling, FH; Auerswald, G; Mackensen, S von

Affiliations : Coagulation Centre Rhine-Ruhr, Duisburg, Germany. Department of Paediatric Haematology and Oncology, Hanover Medical School, Hanover, Germany. Haemophilia Centres, Hildesheim-Hanover-Osnabrück, Hanover, Germany. Coagulation Centre, Bremen Central Clinic, GeNo Ltd, Parent-Child-Centre Prof. Hess, Bremen, Germany. Haemophilia Centre, University Hospital Giessen/Marburg, Giessen, Germany. SRH Haemophilia Treatment Centre, SRH-Kurpfalz-hospital Heidelberg, Heidelberg, Germany. Department of Paediatrics, Paediatric Haemophilia Centre, Goethe University, University Hospital Frankfurt, Frankfurt/Main, Germany. Medical Clinic II, Institute of Transfusion Medicine, Goethe University, University Hospital Frankfurt, Frankfurt/Main, Germany. Children’s Hospital, Olgahospital, Stuttgart, Germany. Children’s Hospital of Central Switzerland, Lucerne, Switzerland. Coagulation Centre, Bremen Central Clinic, GeNo Ltd, Parent-Child-Centre Prof. Hess, Bremen, Germany. Department of Medical Psychology, University Medical Centre of Hamburg-Eppendorf, Hamburg, Germany.

Publication: Haemophilia; 2025

ABSTRACT: INTRODUCTION: Von Willebrand disease (VWD) is one of the most common hereditary disorders of primary haemostasis. Females with VWD often report heavy menstrual bleeding (HMB) that can significantly impact health-related quality of life (HRQoL). AIM: To analyze clinical and HRQoL data of females with VWD from the WIL-QoL study. METHODS: Clinical and obstetric-gynaecological data were collected by a physician-led clinical questionnaire and HRQoL data via a patient-reported VWD-specific questionnaire (VWD-QoL). RESULTS: Data on menstruation were available from 113 females with VWD (15 post-menarche girls [mean age 14.8 ± 1.7 years] and 98 women [mean age 37.8 ± 12.6 years]). HMB (defined as increased [simultaneous use/replacement of sanitary pads/tampons every 1-2 h] and/or prolonged [>7 days] menstrual bleeding) was reported in 85% and 77% of girls and women, respectively. Of 72 women who became pregnant, 31 experienced bleeding during pregnancy (3 women had missing data) and 32 women reported at least one miscarriage (44%). Overall, 12/96 women (13%) underwent hysterectomy due to bleeding; these women had more moderate-to-severe VWD (p < 0.006) and a higher bleeding score (p < 0.013) than women who did not undergo hysterectomy. Women still experiencing menstruation (n = 71) who ‘often/all the time’ self-reported HMB (HMB-PRO), pain during menstruation and impairments in everyday-life activities due to menstruation had significantly worse HRQoL compared with those who ‘never/rarely’ reported these impacts (p = 0.004, p < 0.001 and p < 0.001, respectively). Women who underwent hysterectomy reported significantly worse HRQoL than those who did not (p < 0.007). CONCLUSION: Female VWD patients experienced substantial disease and HRQoL burden that is further exacerbated by HMB.