104 Chapter 6 making regarding type of interventions. The women who participated in these focus groups were conscious of the effect of VWD on their well- being. Most of them had the experience of severe bleeding complications during surgery. They were treated in a haemophilia centre at a university clinic or in general hospitals. Bleeding complications occurred in 7 of 10 participants during hysterectomy because the diagnosis VWD was made only after surgery. Selection bias and small number of participants in our study might have contributed to this high proportion. However, other studies showed 14% till 63% of undiagnosed bleeding disorder in women undergoing hysterectomy due to HMB. (4, 16, 17) Instead of undergoing hysterectomy, some women would have preferred an EA if the provider had mentioned this option. In this study, EA was successfully and without bleeding complications in a single patient. Prior to surgery, no medication was needed. Other studies support this finding and show high satisfaction rate among women with VWD who underwent endometrial ablation (8, 14). The women mentioned a lack of knowledge from professionals regarding underlying bleeding disorders in patients with HMB. They would be grateful if in-depth information could be provided. They were explicit about this, which confirms findings by Govorov et al (15), that improving health- associated quality of life through counselling is important in VWD woman faced with HMB. They also clearly ex-pressed a need for spport for younger women, who were diagnosed with VWD. Previous studies underline these findings: differences between adolescents and adult are more frequent bleeding complications, gynaecologic surgery/procedures and more delay in adults. Srivaths et al (16) concluded that longitudinal studies are needed to determine whether improved awareness and education in adolescents may prevent bleeding complications. Improvement activities should focus on educating providers in emotional support of women with bleeding disorders and promoting checklists like a bleeding assessment tool list in GP and gynae-cologic outpatient clinic. In terms of emotional support, the needs and values which these women expressed were careful listening and reflecting out loud what a woman is worried about when faced with HMB. If pharmacologic treatment does not work, actions should be taken such as referring to a gynaecologist. Govorov et al (15) concluded that in 50% of the study population, the received pharmaco-logic treatment does not prevent HMB and the impact of HMB on quality of life was substantial. The women would prefer to be supported by a small team of experienced professionals, like haemophilia nurses, to decrease the risk of errors. The VWD women expressed that they need professionals who reassure them that they are taking care of their well-being. The women emphasized the importance that professionals should be in direct contact with each other. They sometimes doubted that general providers in the hospital were properly instructed about the use of medication needed for their surgery. The women suggested that working in one file or one electronic health system could be a solution to solve this problem. All women carried a medical passport or VWD information leaflet. We acknowledge that our study has some limitations. First, the study population is a selected group of 11 women with moderate or severe VWD (type 1 and 2A) who underwent surgery
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