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

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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 analyse 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 < .006) and a higher bleeding score (p < .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 = .004, p < .001 and p < .001, respectively). Women who underwent hysterectomy reported significantly worse HRQoL than those who did not (p < .007). CONCLUSION: Female VWD patients experienced substantial disease and HRQoL burden that is further exacerbated by HMB.