Milea Timbergen

230 Table 2. (continued) Contact with health care professionals Physiotherapist / Occupational therapist Dietician Social worker Psychologist Pain specialist Home care / nursing care Other b 5 1 2 1 1 1 1 Self-reported symptoms c Lump with obvious growth Pain Tumour complains during daily activities Functional limitations (before treatment) 10 3 8 3 Self-reported medical history c Surgery related desmoid Desmoid related to hormonal status 6 3 a n = 1: surgical resection with post-operative radiotherapy, n = 1 surgical resection, radiotherapy and isolated limb perfusion (ILP) ; n = 1 surgical resection (with final amputation of the lower leg, radiotherapy, isolated limb perfusion, hormonal therapy, experimental chemotherapy. b lymphatic therapy; c obtained during the focus group sessions as reported by the patients Qualitative analysis HRQoL-issues were categorised into six themes 1) diagnosis, 2) treatment, 3) follow-up and recurrence, 4) physical domain, 5) psychological and emotional domain and 6) social domain. The themes were further categorised into subthemes. An overview of themes, subthemes, key issues and quotes is provided in Table 3. Diagnosis Almost all participants reported feelings of uncertainty and anxiety of having cancer during the period of waiting on their final diagnosis. They described this as having a great impact on their overall life. Upon diagnosis, feelings of relief are described due to the borderline nature of this disease. Participants with more symptoms and a more aggressive clinical course of DTF mentioned being frustrated about underestimation of the consequences since the disease is categorised as a borderline tumour and can act in a more malignant way with sometimes severe sequelae compared to benign tumours. The opinion on receiving information about DTF varied amongst participants. Some participants felt they did not receive enough information from their treating physician, some participants searched for more information on internet or asked their general practitioner, and some deliberately did not search on the internet because of fear to find unpleasant information. Most participants agreed that the amount and depth of information they found in general was 8