Information to Coming BMT Patients - Creating a Web Site

Abstract

As transplant coordinators we have the first contact with all Bone Marrow Transplant (BMT) patients referred to our unit. Our experience is that the patients have a lot of questions concerning transplant. Initial information about BMT is given at a different hospital, by physicians and nurses not specialized in BMT. Purpose To identify what information is given to the patient from diagnosis until being admitted to the transplant unit. What information is needed from patient, doctors and nurses’ perspective and how it should be given? To prepare the participants for an interview, we created a semi structured questionnaire and emailed it to eight doctors and nurses at five referring hematology units in Denmark. All agreed to participate. Seven interviews were carried out over the phone and one in person. Questionnaires were handed out to eight patients who received their transplant during September and October 2012. All agreed to participate. Patients were interviewed in person at the hospital. Two focus group interviews were conducted among nurses in the in- and outpatient BMT-clinic. All participants stated that they would like more information about time range from diagnosis to the time of transplant. Neither staff from referring hematology units nor patients had the full view of time from HLA typing is performed to the time of transplant. The patients stated that lack of time frame made them and their family frustrated since there are economic, work related, and social arrangements to take care of before transplant. Their idea was that information could be carried out as a small pamphlet. All patients and staff from referring units asked for more visual information; video with patients going through transplant and pictures of the transplant unit. Some asked for a list with links to national and international web pages about BMT and a list with frequently asked question (FAQ). Patients suggested that staff from the transplant unit should go to referring hematology units to teach staff. Contact to the Danish Cancer Society has been established and a video production has started. Video will be ready in early 2014 and will be posted on the Danish Cancer Society’s web site and a link will be present on the hospital web page. A time line with information about the deferent processes has been created and is posted on the hospital web page together with links to books about transplant, which can be downloaded. Links to relevant national and international web pages has been posted. List with FAQ has been developed and posted on the web page. To introduce the new part of the hospital website to doctors and nurses at referring hematology units. To post the website so current and future patients will get to know it. To post pictures of the BMT unit on the hospital website. Future project is to arrange visit/meetings with referring hematology units, teaching staff.