Milea Timbergen

258 Financial consequences, due to insurance problems, the need to take time off work or increasing traveling costs can also affect HRQoL, although the issues regarding these subjects all received relatively low scores in the current study 21 . Social problems, such as the burden of having a rare disease on family and carers, as well as having this diagnosis at a young age, can also have a negative impact on HRQoL 20, 21 . This unique study identified important issues for DTF patients and compared the views of British and Dutch patients. Most issues were scored higher by British patients compared to Dutch patients (indicating a higher relevance for the specific issue). This phenomenon was also seen comparing EORTC QLQ-C30 scores, as British patients scored statistically significantly lower (indicating worse functioning) on four out of five function scales, and for the symptom scales insomnia, pain and fatigue. Although both participating centres are tertiary centres visited by patients with more complex or advanced disease, the catchment area of the Royal Marsden Hospital (London, UK) is larger than of the Erasmus MC (Rotterdam, NL) possibly creating selection bias during this study. Norm data obtained by the EORTC of the general Dutch and British population showed a comparable trend with higher scores on symptom scales and single items scales (indicating greater symptom burden) and lower scores on functioning scales (indicating worse functioning) comparing the data from the general Dutch and British population. Data from 2017 of The Organisation for Economic Co-operation and Development show similar results with lower scores (indicating a lower well-being) of British participants compared to Dutch participants on several measures of well-being (e.g., housing, income, education and health and life satisfaction) 22 . This suggest that, although our data might show differences between both countries of “impact of disease” on HRQoL, baseline scores in the normal population differ and that the experience of HRQoL-issues depends on where you live 16, 22 . Comparisons between patients and a matched cohort of the general population based on nationality, sex and age, did not yield significant results, except for “physical functioning” and “role functioning” comparing the Dutch patients with the Dutch general population. Additionally, we compared the scores of HCPs and participating patients. An important finding of this study was the clear overlap of issues that were important to patients and HCPs. The HCPs rated various issues higher than patients particularly with regard to pain, stress about the diagnosis, and concerns about the future. We acknowledge that this study has several limitations. The small sample size is explained by the rarity of DTF. A larger cohort is needed to test the psychometric aspects of a DTF- 9