Milea Timbergen

224 Participants received a brief introduction with the explanation of the study objectives and an opening question for introduction was answered by each participant. Next, pre-prepared exploratory questions developed specific for the objectives of this study were asked to encourage conversation and discussion. Transition questions were asked to explore several aspects of HRQoL-issues around the time of diagnosis, treatment and follow-up. The focus groups lasted 1.5-2 hours, and an exit question was used to terminate the focus group. Participants received an evaluation form and 15 euro gift certificate in order to express our appreciation for their participation Focus group sessions were audio recorded, and transcribed by the first author (MJMT) ATLAS.ti 8.0© (Scientific Software Development GmbH, Berlin, Germany) was used for generating codes for themes and subthemes. The field notes were used as complementary data to transcripts as they described non-verbal communication of participants. Data was ordered into relevant code terms and then categorised into themes by two researchers (MJMT and OH) and analysed independently. Consensus was reached through continuous discussion. Relevant quotes of focus group participants were selected to support findings. Approval from the Medical Ethics Committee of Erasmus Medical Centre (MC) in Rotterdam, the Netherlands was obtained for this study (file number MEC-2017-269). All patients gave written informed consent before the start of the focus groups and patient’s anonymity and confidentiality were ensured throughout the study by the use of study codes replacing identifying information. Only the first author had direct access to the digital record of study codes and patient information. Results Literature review A systematic literature search (Supplemental Materials 1) showed 3114 articles after deduplication. In total, 3067 articles were excluded based on title or abstract. Full-text reviewing, took place for the remaining 47 articles excluding another 34 articles (flow chart Supplemental Material 2). Thirteen articles, describing seven validated scoring systems were identified. No DTF-specific questionnaires were identified in this literature review (Table 1). 8

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