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

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).

To analyse clinical and HRQoL data of females with VWD from the WIL-QoL study.

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).

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).

Female VWD patients experienced substantial disease and HRQoL burden that is further exacerbated by HMB.