Milea Timbergen

272 Supplemental Table 4. (continued) 106 Change of dominant side during writing 1.4 1.7 0.005* 1.0 1.9 0.111 1.5 2.1 0.049* 107 Change in appetite 1.3 1.8 0.019* 1.1 1.6 0.042* 1.5 2.4 0.002* 108 Oedema (abnormal accumulation of fluid) 1.3 1.8 0.002* 1.3 1.4 0.890 1.7 2.0 0.231 109 Problems with fertility 1.3 2.0 0.001* 1.1 1.6 0.342 1.8 2.8 0.016* 110 Parental role affected 1.3 2.2 0.000* 1.3 1.3 0.522 1.9 2.8 0.048* 111 Vomiting 1.3 1.5 0.106 1.1 1.6 0.141 1.2 1.9 0.008* 112 Eczema 1.3 1.3 0.643 1.2 1.3 0.963 1.2 1.6 0.449 113 Less attention from family and friends because of the “benign” disease 1.2 2.1 0.000* 1.1 1.5 0.370 1.8 2.7 0.013* 114 Lack of trust in your treating physician 1.2 2.0 0.000* 1.2 1.3 0.711 1.9 2.3 0.307 115 Feeling guilty towards siblings because you receive more attention because of your disease 1.2 1.6 0.004* 1.1 1.4 0.611 1.4 1.9 0.114 116 Shipped from hospital to hospital to hospital 1.2 2.2 0.000* 1.3 1.1 0.711 2.3 2.1 0.769 117 Missing school 1.2 2.1 0.000* 1.3 1.1 0.897 1.8 2.7 0.014 118 Feeling ashamed to use support tools (e.g. wheelchair, scooter, electric bike etc.) 1.2 1.9 0.000* 1.1 1.4 0.537 1.7 2.4 0.074 119 Lack of support from family/friends 1.2 1.9 0.000* 1.2 1.2 0.941 1.7 2.3 0.048* 120 Suicidal thoughts 1.2 1.6 0.009* 1.2 1.2 0.643 1.2 2.6 0.000* 121 Problems with driving a car 1.2 2.0 0.000* 1.1 1.3 0.537 1.7 2.6 0.003* 122 Loss of friendships 1.1 1.9 0.000* 1.1 1.2 0.890 1.6 2.6 0.010* 123 Hives 1.1 1.3 0.211 1.1 1.2 0.890 1.1 1.6 0.173 124 Change of living accommodation 1.1 1.7 0.001* 1.0 1.2 0.414 1.3 2.4 0.001* Total mean 1.8 2.3 1.5 2.2 2.0 2.8 * statistically significant difference; HCP, health care provider Grey marked areas are issues with an M-score of >1.5 given by either patients or HCPs, the cut of value for inclusion in the DTF-specific HRQoL-tool. The p-value represents the comparison of the scores of the participating patients and HCPs, the comparison of the scores of the Dutch and British participating patients, and the comparison of the scores of Dutch and British HCPs. 9