Milea Timbergen

223 Data collection The focus group sessions were supervised by the first author (MJMT), a second independent researcher kept written records and was not actively involved in the discussions. A pre-prepared protocol, based on the protocol of Husson et al. 23 was used for guidance (Figure 1). Figure 1. Focus group guideline Opening question • Can you introduce yourself by telling your name, age and place of residence and tell us shortly about the location of your DTF tumour, which treatments you had and what the current status is. (This question was asked in to every participant at the start of the focus group) Transition questions Moment of diagnosis • Can you share your experience around the moment of diagnosis? • Can you share your experience about the referral to this specialised centre? • What kind of feelings did you experience when you were first diagnosed? • How was the information about DTF in the first period? • Can you remember the expectations that you had when you visited the specialist for the first time? • How did your family and friends react? Did you need any support? Did you receive this support? • Can you explain how you were informed about the treatment? Symptoms • Did you experience any problems on physical, emotional, social and/or financial level? • How do / did you cope with your symptoms? • Did you have to adjust your way of life? I yes, in what manner? • Did you receive any support from your family and friends? • How did you experience your contact with your treating specialist? • How did you experience the professional support during the course of disease? • How did you experience the amount of information about the disease and the treatment(s)? Treatment • Can you tell us what kind of treatment(s) you received? • Can you tell us how the treatment(s) affected your life? Work/ finances • How did the disease effect your work and financial situation? Key questions • Which symptoms do you associate with your primary treatment(s)? • Which symptoms do you experience during your follow-up? • Which symptoms, caused by the desmoid tumour, do you experience on the long term? • Which symptoms, caused by the desmoid tumour, have the most impact on your life? Exit questions • Can you describe your feelings when we are discussing your disease? • Can you describe your feelings about this discussion? 8