Milea Timbergen

250 scales (physical, role, cognitive, emotional and social functioning), a global health status scale, three symptom scales (fatigue, nausea and vomiting, and pain), and six single items (appetite loss, diarrhoea, dyspnea, constipation, insomnia, and financial difficulties). The questionnaire has a 1-week time frame and uses a four-point response format (“not at all”, “a little”, “quite a bit”, and “very much”), with the exception of the global health status scale, which has a seven-point response format. The scores were calculated using linear transformation to a score between 0 and 100. For the functional scales and the global health status, a high score represents a high (healthy) level of functioning. A high score for the symptom scales represents a high level of symptoms (greater symptom burden) 17 . The EORTC QLQ-C30 summary score was calculated using the mean scores of the function scales and the reversed mean scores of the symptom scales and single items (financial impact and global health status excluded), and are summarized as the mean of the combined 13 QLQ-C30 scale scores A higher summary score represented a better outcome 18, 19 . The summary score was only calculated when all of the required 13 scale and item scores were available. Data analysis and handling of missing items were done according to the scoring manual of the EORTC 17 . Statistical analysis Patients were matched, using a 1:10 nearest-neighbour match method, with the general population based on nationality, age, and sex using Rstudio (RStudio, version 1.0.153, Boston, MA, package MatchIt). Patients with missing values (lacking information regarding age or sex) were excluded from the analysis. Differences in priority scores (Dutch versus British participating patients, and HCPs versus participating patients), and differences in scores of the EORTC QLQ-C30 scales between groups (Dutch versus British participating patients, and Dutch and British participating patients versus the Dutch and British general population) were tested for their significance using the Mann-Whitney U test. SPSS Statistics (version 24) was used for the Mann-Whitney U tests (IBM, Armonk, New York, USA). Two-sided p < 0.05 was considered statistically significant. Results Patient cohort Forty-one patients from the Erasmus MC, Rotterdam, the Netherlands, and 32 patients from the Royal Marsden Hospital, London, UK, were approached during July and August 2018. Out of 73 patients, 29 patients (total response rate of 39.7%) gave written informed consent (Figure 1). The cohort comprised of 10 males and 19 females with DTF most 9