Milea Timbergen

269 Supplemental Table 4. (continued) 41 Not being able to sleep because of pain 2.0 2.7 0.021* 1.4 3.0 0.001* 2.2 3.7 0.000 * 42 Frustrated having to explain the meaning of this disease to others 2.0 2.5 0.047* 1.6 2.6 0.048* 2.4 2.8 0.349 43 Feeling that you have to fight this disease 2.0 2.3 0.169 1.5 2.8 0.004* 2.1 2.8 0.039 * 44 Stiffness of a limb 2.0 2.5 0.056 1.5 2.8 0.004* 2.3 3.1 0.048 * 45 Lack of information about recurrences rates 2.0 2.5 0.003* 1.5 2.6 0.013* 2.2 3.2 0.019* 46 Covering up tumour(s) and/or scar(s) 2.0 2.4 0.031* 1.8 2.2 0.505 2.2 2.6 0.186 47 Poor communication between GP’s and specialist, and also between professionals 1.9 2.1 0.297 1.6 2.4 0.080 2.0 2.5 0.281 48 Feeling that you have to explain your circumstances 1.9 2.3 0.088 1.6 2.5 0.033* 2.0 2.9 0.025* 49 Feeling that you have a chronic disease 1.9 2.8 0.003* 1.5 2.6 0.035* 2.7 3.1 0.209 50 Negative responses to appearance 1.9 2.5 0.005* 1.8 2.0 0.499 2.1 3.2 0.002* 51 Missing psychological support 1.9 2.3 0.019* 1.5 2.4 0.053 2.1 2.7 0.096 52 Lack of libido 1.8 2.0 0.208 1.3 2.6 0.005* 1.8 2.5 0.025* 53 Having to take sick leave 1.8 2.4 0.008* 1.6 2.1 0.286 2.1 3.0 0.004* 54 Change of career ambitions after the diagnosis 1.8 2.0 0.144 1.4 2.4 0.016* 1.9 2.4 0.214 55 Lack of continuity of doctors during follow-up 1.8 2.2 0.058 1.4 2.4 0.089 1.9 2.8 0.035* 56 Lack of information received about desmoid-type fibromatosis 1.8 2.6 0.003* 1.3 2.4 0.016* 2.4 2.9 0.234 57 Long distance to travel to the hospital 1.8 2.4 0.002* 1.5 2.2 0.208 2.2 3.0 0.063 58 Short temper 1.8 1.9 0.329 1.5 2.2 0.122 1.6 2.7 0.002* 59 Lack of confidence 1.7 2.4 0.006* 1.5 2.0 0.329 2.0 3.1 0.009* 60 Problems with concentration 1.7 1.9 0.247 1.6 1.9 0.378 1.6 2.6 0.005* 61 Feeling that you are a burden on your family and/or partner 1.7 2.4 0.007* 1.3 2.4 0.025* 2.1 2.9 0.019* 62 Negative body image 1.7 2.7 0.000* 1.6 1.9 0.404 2.3 3.7 0.000* 9