146 Chapter 9 pre-menopausal patients with HMB. A free text question was added by us to hear personal experiences about the treatment of HMB and the diagnostic pathway. For the assessment of bleeding propensity, the cutoff for an abnormal BAT score was set at ≥5 for young women (18-30 years) or ≥6 for women aged 31-52 years. The result showed that an abnormal total BAT score was more common in women aged 31-52 years who underwent a hysterectomy compared to those who did not. Drug therapy (hormonal, tranexamic acid, or iron) was found to be more commonly prescribed in women with an abnormal BAT score. The most common responses of participating patients to our open question regarding diagnostics and the treatment process concerned the moderate attention of healthcare providers on the overall impact of HMB on quality of life and the need for patient-centered care. We concluded that among the patients with HMB, there is a substantial group of patients with a bleeding tendency. This higher tendency to bleed can unconsciously influence the choice of HMB treatment because a hysterectomy is chosen more quickly. Our advice was that the use of structured screening instruments for the assessment of underlying bleeding propensity at the gynaecology outpatient clinic can contribute to optimisation of diagnostics and treatment for women with HMB. To investigate the impact of HMB and coagulation problems on quality of life, we conducted focus group interviews. These interviews and a thematic analysis are described in chapter 6. Here, we explore what would be the most important factors for support in women with moderate or severe VWD disease, who are undergoing surgery for HMB. Eleven women with VWD aged 41-68 years who have undergone a hysterectomy or EA due to HMB participated in this study. Only three of the 11 participants had been diagnosed with VWD before surgery. Patients were identified by participation in a nationwide study of Von Willebrand disease in the Netherlands (WiN study) and prior surgical therapy for HMB. The following factors for good support in the diagnostic trajectory were identified during these focus group interviews: receiving information about the probability of success and risks specific to coagulation problems (intra-operative, re-intervention); proactive support of caregivers with regard to coagulation problems and prophylaxis around procedures; and considering bleeding disorders as the cause of the HMB. Other topics were: experiences with VWD and/or preparation for surgical procedures, how relieved patients were when heavy menstruation actually stopped, and patients’ hopes that in the future healthcare providers would work together better in an interdisciplinary way to provide women with more optimal care. We concluded that in this focus group study of women with VWD who underwent surgery for HMB, support from professionals can be improved by recognizing a bleeding disorder in women with HMB earlier, providing information through shared decision-making about different types of surgery. In order to improve communication on topics that are difficult to discuss, such as the impact of HMB on quality of life, we investigated whether narrative medicine with the use of applied art can contribute to the gynaecological workplace. Narrative medicine is a renowned qualitative research method to discuss complex problems and care experiences between healthcare providers and/or with patients. By using a specific artwork as a ‘third eye’, participants are more easily reached to express experiences and impact on complex and/or stigmatizing
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