97 Women with VWD and HMB prefer proactive support from providers for treatment of HMB INTRODUCTION Heavy menstrual bleeding (HMB) is considered an important health problem, specifically in women with Von Willebrand disease (VWD) (1). In 20% of women presenting at the gynaecologist with HMB without gynaecological abnormalities, a coagulation disorders were diagnosed (2, 3). In several studies, over 74-92% of women with VWD report HMB (1, 2). According to the Von Willebrand in the Netherlands study (WiN study), in 25% of all women with moderate-tosevere VWD of 40s or older, a hysterectomy for HMB had been performed, which is strikingly higher than in the general Dutch population (4). Even more surprising was the fact that only 2 women with HMB had undergone bipolar endometrial ablation (EA) (4). Second- generation devices use a variety of technologies to ablate the endometrium, including EA (NovaSure® endometrial ablation; Hologic, Inc, Bedford, MA, USA [FDA approval obtained in 2001]) (5). In the general population, the actual treatment of choice depends on the anatomic characteristics of patients as well as on their preferences for preserving their uterus. Instead of undergoing hysterectomy, women may prefer minimally invasive interventions with outpatient treatment such as EA (6). Endometrial ablation is used worldwide and is appropriate for women with HMB without gynaecological pathology who have complete childbearing (7). A 10-year literature review described that in the follow- up (6- 60 months), amenorrhoea rates for EA ranged from 30% to 75%. Proportion of patients who reported being satisfied with the EA ranged from 85% to 94% (5). EA appears to be an effective op-tion for treatment of women with coagulopathy (8). For hysterectomy vs EA, the variability between women with or without coagulopathy can reflect differences in professional support, as many providers are involved in the treatment and support of women with VWD and HMB. In Dutch guidelines of heavy menstrual bleeding in the gynaecologic practice, the main goal is to enhance well-being and meet the woman’s needs in dealing with HMB (Richtlijn Nederlandse Vereniging voor Obstetrie en Gynaecologie (NVOG), Hevig menstrueel bloedverlies (HMB); 2013). Women’s preferences should be integrated into professional support, giving all women access to expert information when confronted with HMB (6). Women with VWD may differ in the amount of support they need depending on their phenotype and health-r elated quality of life (4, 9). However, what is necessary as optimal support in women with VWD faced with HMB in the Netherlands remains unknown. In this study, we asked adult women with moderate or severe VWD to indicate what kind of professional care they had received when faced with HMB and what support they would prefer. This focus-group study aimed to gain insight into the wants and needs of VWD women who underwent surgery because of HMB to improve professional support. The goal was to explore key factors for successful support VWD when faced with HMB and surgery, to help providers optimally meet their patients’ need. We choose to include VWD women who had had the whole range of HMB treatment offered by providers. 6
RkJQdWJsaXNoZXIy MTk4NDMw