Milea Timbergen

222 Materials and methods Literature review The literature review was conducted in accordance with the PRISMA guidelines 22 . A systematic literature search with terms related to sporadic DTF and HRQoL (Supplemental Materials 1) was conducted by an expert research librarian on November 6th, 2017 to identify HRQoL-tools currently used among DTF patients. No language or publication limitations were applied. Used databases were Embase, Medline Ovid, Web of science, Cochrane Central, Psyc Info, and Google Scholar. The resulting publications were analysed using inclusion and exclusion criteria at two levels: title/ abstract (1) and full text (2) by two reviewers (MJMT and OH). Data from papers that met the inclusion criteria at full text level were extracted for final inclusion by one reviewer (MJMT) (Supplemental Materials 2). Corresponding authors were contacted in case of lack of availability of full text, three authors granted our request. Variables that were identified in included papers were number of patients, number of patients for which PROMs were available, tumour location, treatment, PROM outcome pre-treatment, and PROM outcome post-treatment. The outcome of each study was reported according to the specific PROM used in the study. Patient recruitment To identify the HRQoL issues of DTF patients, focus group sessions were organised. Patients diagnosed with sporadic DTF were recruited from the Erasmus Medical Centre (MC) in Rotterdam, the Netherlands. As FAP-associated DTF patients are also confronted with many other issues compared to patients with sporadic DTF, these patients were excluded. Eligible patients were diagnosed with DTF, regardless of their stage of disease (e.g., pre-treatment or during follow-up), previous or current treatments and site of disease. Additionally, they had to be above the age of 18 at the time of the focus group and participation required sufficient Dutch language skills. Patients with a recent diagnosis of cancer were excluded since this diagnosis might influence their HRQoL. Potential participants were approached by telephone, with a maximum of four attempts to explain the study objectives and received a written invitation and information letter. In total, three focus groups were organised in July and August 2017; one with male participants, one with female participants and one mixed sex group. The decision to organize separate sessions for both sexes was based on the assumption that patients would be more likely to share personal experiences or feelings with the same sex. The third, mixed sex group was organized separately because of logistic reasons. The focus group sessions took place in the Erasmus MC. Written informed consent (including permission for making field notes and audio recording for anonymous processing) and background information was obtained at the start. 8