Milea Timbergen

267 Supplemental Table 4. Mean (M) scores per issue ranked according to their relevance Issues Total Patients (n = 29) Total HCPs (n = 31) p-value Dutch patients (n = 17) British patients (n = 12) p-value Dutch HCPs (n = 21) British HCPs (n = 10) p-value 1 Worries about tumour growth 3.0 3.4 0.186 2.6 3.5 0.020* 3.2 3.8 0.172 2 Feeling that there is something in your body that does not belong there 2.9 2.8 0.889 2.5 3.3 0.066 2.7 3.1 0.287 3 Fear of tumour growth/fear of the tumour growing into adjacent tissues or organs 2.8 2.9 0.572 2.4 3.3 0.066 2.7 3.4 0.039 * 4 Desmoid-type fibromatosis is unknown among most doctors 2.6 2.8 0.453 2.1 3.5 0.001* 2.7 3.2 0.209 5 Stress around check-ups during the follow-up 2.6 3.0 0.071 2.6 2.5 0.926 3.1 2.8 0.237 6 Contemplation about the disease 2.6 2.8 0.404 2.4 2.8 0.227 2.8 2.8 0.846 7 Experience of uncertainty during the course of disease 2.6 3.2 0.039* 2.1 3.3 0.011* 3.1 3.3 0.533 8 Feeling that the disease is aggressive 2.5 2.8 0.237 2.0 3.2 0.008* 2.6 3.4 0.005 * 9 Change in life perspective (e.g. feeling thankful not having cancer) 2.5 2.2 0.314 2.4 2.6 0.711 2.1 2.4 0.287 10 Fear of recurrence after treatment 2.5 3.0 0.063 2.1 3.1 0.014* 3.0 3.0 1.000 11 Family members and/or friends worrying about your disease 2.5 2.4 0.776 1.8 3.3 0.000* 2.0 3.0 0.010 * 12 Feeling frustrated about the “benign” diagnosis with malignant features 2.4 2.9 0.203 2.0 3.1 0.018* 2.7 3.2 0.205 13 Changed sensitivity of the of the tumour area 2.4 2.7 0.375 1.9 3.3 0.011* 2.4 3.3 0.011 * 14 Pain 2.4 3.2 0.016* 1.8 3.3 0.002* 2.9 3.9 0.007 * 15 Stress about the diagnosis 2.4 3.2 0.007* 2.5 2.3 0.677 3.2 3.3 0.530 16 Fear of second tumours 2.4 2.3 0.948 1.9 3.1 0.003* 2.2 2.6 0.266 17 Concerns about the future 2.4 3.0 0.012* 2.1 2.8 0.053 2.8 3.4 0.142 18 Not being able to lean on the tumour site 2.4 2.3 0.994 1.8 3.1 0.013* 2.0 3.0 0.011 * 9