Milea Timbergen

248 The main goal of this study was to determine the relative importance of each issue and receiving feedback on appropriateness of content and breadth of coverage. In the present study, we used the previously identified issues to 1) identify the most relevant issues to patients with DTF in two health care settings (UK and NL) and to 2) identify differences in scores between both countries. Materials and Methods Identification of issues The EORTC Quality of Life group methodology for developing a questionnaire was used for the selection of relevant issues based on previous focus groups and patients interviews 14 . Issues, that had previously been identified to be of concern to DTF patients, were listed per country (UK and NL). A total of 188 issues were identified in the UK group and 110 issues were identified in the Dutch group. Next, issues were grouped into categories and duplicate issues, covering the same topics were removed. A total of 124 issues were converted into a provisional list of issues. All issues were reviewed by two authors (M.J.M.T. and O.H.). All issues were translated by native English and Dutch speakers. Patient selection Patients with DTF were approached for participation by their treating physician. Inclusion criteria were; histologically proven DTF, age ≥18 years, Dutch or English language skills and a “recent” visit (<2 years) to the hospital. Exclusion criteria were; participation in one of the previous focus groups or patient interviews, and patients with a diagnosis of cancer or familial adenomatous polyposis (FAP). Patients received an information letter which explained study objectives. Baseline characteristics and details about the individual disease trajectory of participants were obtained. Patients were only invited to participate once and did not have to provide a reason if they declined. No reminders were send. All data from patients were collected and processed anonymously. Selection of health care providers To examine whether HCPs, with expertise and experience in sarcomas and DTF have the same perspectives as patients with DTF about key HRQoL-issues, an e-survey of the same 124 issues was created using Lime Survey Servicebedrijf© software. The issue list was available in two languages (Dutch and English) and issues were presented in a random order. In the Netherlands, HCPs from the multidisciplinary team (e.g., surgeons, oncologists, radiologists, radiotherapists, sarcoma clinical nurse specialists, and physiotherapists) were 9

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