99 Women with VWD and HMB prefer proactive support from providers for treatment of HMB Table 1: Characteristics of FG participants. Mean (yrs) 58 (range 41-68) Level of education Primary education (%) Lower vocational training (%) Secondary vocational training (%) Higher vocational training (%) University (%) 1 (9%) 1 (9%) 1 (9%) 6 (55%) 2 (18%) Civil status Married (%) Single (%) 10 (91%) 1 (9%) Age at diagnosis of VWD (mean yrs) Type 1-VWD (%) Type 2a-VWD (%) 36 (range 4-49) 9 (82%) 2 (18%) Type of surgery Hysterectomy (%) Endometrial ablation (%) 10 (91%) 1 (9%) Abbreviation: VWD: Von Willebrand Disease, yrs: years. All participants were asked to introduce themselves including demographics, phenotype of VWD, diagnosed VWD before or after surgery and treatment for HMB. Each focus group started with opening and introductory questions to allow participants to feel at ease and to start the discussion of the topic. The main part of the discussion was guided by transition and key questions. Open- ended side questions were asked to elicit more in- depth information on who exactly provided exactly what information and emotional support. Topics that were addressed were bleeding disorders, se-verity of complaints, duration, types of surgery and long- term out-come. Participants were asked what would be needed for optimal support to women with VWD and HMB in the Netherlands. Before finishing the interview, the moderator invited the participants to ask additional questions or provide feedback on the discussion. After the first focus group, the moderator and observer discussed their findings. Identified themes were explored during the second focus-group interview to determine the most patient-relevant domains. The moderator and observer completed debriefing forms after each focus group. Analysis A professional transcriptionist completed transcripts of the recordings using Microsoft Word. Each transcript was anonymized and encoded before performing transcript analyses. The authors met to share initial codes and categorize the codes, based on back-ground literature and the research questions and developed a coding system (HPE, YVS) (10-12). Similar codes were grouped together into subcategories and key themes. Transcripts were independently analyzed by the moderator and observer to determine the suitability of the main categories (HPE, YVS). We considered the group interaction, observer’s written, debriefing forms and the sequence of topics (10, 13). Doubts or disagreements were resolved through discussion and consensus. The qualitative findings from the focus groups were presented as descriptive 6
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