Milea Timbergen

253 Ranking of priority of the issues Ranking of HRQoL-issues revealed that 13 out of 124 issues (10.5%) were chosen to be the most relevant (prevalence ratio of >30%) (Table 2). Patients considered the following issues as relevant and missing on the current issue list; “problems with health care insurances”, “coverage of costs related to the disease such as traveling costs”, “lack of adequate online information”, “lack of knowledge about treatment options outside the region or country”, “lack of information about pain management and referral to pain professionals” and “lack of advice regarding dietary restrictions or playing sports”. A list of the missing items, general remarks and quotes is provided in Supplemental Table 2 and Supplemental Table 3. British versus Dutch patients Table 2. Top 10 most important issues according to number of participating patients (n) Participating patients (total n = 16) a Health care providers (total n = 31) n Prevalence ratio n Prevalence ratio Worries about tumour growth Fear of the tumour growth and/or tumour growing into adjacent tissues or organs Feeling that there is something in your body that does not belong there Stress around check-ups during the follow-up Pain Reaching a definite diagnosis is time consuming Not being able to sleep because of pain Feeling frustrated about the “benign” diagnosis with malignant features Desmoid-type fibromatosis is unknown among most doctors 10 9 7 6 6 5 5 5 5 62.5% 56.3% 43.8% 37.5% 37.5% 31.3% 31.3% 31.3% 31.3% Worries about tumour growth Experience of uncertainty during the course of disease Pain Lack of optimal treatment options and /or uncertainty about preferred treatment Concerns about the future 17 12 11 10 10 54.9% 38.7% 35.5% 32.3% 32.3% a n = 13 participating patients failed to provide a top 10 The cut-off value for inclusion in the DTF-specific HRQoL-questionnaire is a prevalence ratio of > 30% 9