103 Women with VWD and HMB prefer proactive support from providers for treatment of HMB “I must undergo surgery soon. You hope that this time there will be no bleeding complications. Knowing how things can go wrong is very stressful to me. That’s a lot of emotion. Fortunately, you can talk about this with your bleeding disorders- nurse.” During the focus-group discussions, all women said it was regrettable that the communication between healthcare providers from different specialties and hospitals was not always the best possible. After some discussion, the women suggested that working in one file or one electronic health system could be the solution to solve this problem: “We cannot look into your file, because that is archived at the clinic. So, we cannot look into your file here in the emergency department.” “If you have hemophilia or VWD it is very important that you have all your operations in one hospital. Then they have always access to your file and they will know everything. That provides also some reassurance for yourself, I think.” The women stated that, during hospital care, being supported by a small team of dedicated professionals would decrease the risk of errors: “The nurses wanted to inject a quantity of DDAVP that was not right for my body weight. My heart missed a beat and I refused to go to the operating room. The doctor came and we went through the calculation. In a rush the nurses were sent back to get extra DDAVP.” “The nursing staff has simply no sense of this medication. They called the pharmacy to ask how to calculate the doses. At some point an anesthesiologist was asked who knew what to do. My advice; go straight to the anesthesiologist or hematologist who knows the calculation of this medication best.” “I have little faith left. I decided it was time to tell her a few home truths. If you are going to give me some medication against severe bleeding it should be Haemate-P. I want the nurse to explain what type of medication they prescribed to me. Because if the professional does not even know what type of medication I use, how will they know what to do if I get a complication or side effect!” “These days it goes against the grain to show too little respect for the active participation of the patient.” DISCUSSION This study provides information on the experiences and challenges faced by VWD women utilizing healthcare services in the Netherlands. Our major findings were that there is a lack of knowledge from professionals regarding underlying bleeding disorders in patients with HMB. Participants mentioned that mindful and proactive support by professionals could be improved by providing information about different types of surgery and shared decision- 6
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