Milea Timbergen

231 Table 3. Themes, subthemes, key issues and quotes of three focus group sessions Themes Subthemes Key issues Quotes Diagnosis Uncertainties about diagnosis Diagnosis Information about DTF Need for information about DTF • Broad differential diagnosis, lack of knowledge about DTF creating feelings of uncertainty and anxiety • Referral to specialized centre is considered to be time consuming • Borderline entity, presented as a “benign tumour” with an aggressive clinical course in some cases • Lack of knowledge about DTF of treating physicians in regional hospitals • Lack of up to date information for DTF patients and their relatives “sent from one specialist to another” “the feeling of insecurity, the fear of dying” “‘it’s a tumour and that is a disastrous scenario” “I took a whole different scenario into account” “you have cancer” “we can’t help you” “I think we have to amputate your arm” “to me it is frustrating, this is a benign disease, but the more you read, the more information you receive, the more you find out about its aggressiveness and invasiveness, so for me this is a malignancy” Treatment Treatment • Lack of uniformity in treatment between hospitals • Shared decision making, patient autonomy “I am glad that the surgeon took it out” “the surgeon said: I don’t want to operate because if I do, I’m not sure what I’m going to find” Follow-up & recurrence Follow-up (concerns about) recurrence / concerns about the future • Lack of clear information about recurrences rates specific for personal situation • Concerns about recurrence or concerns about future problems due to DTF “you know it is possible that you might need surgery another time, but if it happens, it happens” “I would love to have assurance that I am done with it” “you have a diagnosis, no prognosis” Physical domain Symptoms (pre-treatment / post- treatment) Localization Medical history / co-morbidity Support physical therapy Self-image / cosmetic • Awareness for functional problems and anticipate by offering physical therapy “the size of a tennis ball” “taking off my t-shirt is not easy, absolutely not” “I am asymmetrical after the surgery” “It took 4-6 months to be ready to practice with a prosthesis, but this leg was pretty messed up because of all the treatments” 8