Milea Timbergen

256 EORTC QLQ-C30 - Dutch versus British participating patients Overall, the mean summary score for the EORTC QLQ-C30 for all DTF patients together was 78.1, with a mean global health score of 68.7 (Table 3). Statistically significant differences between scores of British and Dutch patients were found for “global health”, “insomnia”, for the symptom scales “pain” and “fatigue”, and for the following functioning scales “cognitive functioning”, “emotional functioning”, “social functioning” and “role functioning” (Table 3). EORTC QLQ-C30 - Participating patients versus the matched general population After 1:10 nearest-neighbour matching based on nationality, sex and age, data of 170 people from the Dutch general population and data of 80 people from the British general population were selected to compare scores between DTF patients and the general population. Four British patients were excluded from this analysis due to missing data regarding their age at the time of questionnaire completion. Dutch patients had a score of 77 for global health and a summary score of 87.2, whereas scores for the matched Dutch population were 78.7 and 89.8 for global health and the summary score respectively. British patients (n = 8) had a score of 59.4 for global health and a summary score of 68.2, whereas scores for the matched British population were 60.2 and 76.7 for global health and the summary score respectively (Table 3) 16 . Dutch participating patients scored lower on all functioning scales compared to the general Dutch population, although only the physical functioning score (p = 0.019) and the role functioning score (p = 0.021) showed a statistically significant difference (Table 3). No statistically significant differences were found comparing EORTC QLQ-C30 scores between the British patients and British general population. Discussion The purpose of this study was to identify the most important HRQoL-issues for patients with sporadic DTF and rank them according to relevance. The most highly ranked HRQoL- issues by patients with DTF were related to the unpredictable disease trajectory of DTF. Additionally, issues regarding the rarity, aggressiveness and the benign classification of DTF received high scores. From the patient perspective, this benign classification was seen as misleading, as DTF can display aggressive growth. In terms of the health care system, the benign disease classification, not being cancer, can have both pros and cons as it can have consequences for insurances and covering of expenses, depending on the country of residence. As the aforementioned items are not included in the EORTC QLQ-C30 questionnaire, a tailored DTF HRQoL-tool could capture these issues. Physical symptoms 9