Milea Timbergen

234 participant reported the feeling that he missed out on starting a family because of extensive treatments which started at a young age. One participant was treated by a psychologist. Several participants stressed that they felt differently about life after diagnosis and stated to be more grateful for their life compared to the time before the diagnosis. Social domain Participants reported that DTF had influenced their working life, as they had to stop working temporarily after treatment. This period ranges from a couple of weeks to two years and in one case not being able to work at all. Participants reported that the uncertainty during the time of diagnosis and the fear of cancer influenced their family life. Several participants mentioned to downstage their problems since they did not want to be a burden to their families or they wanted to protect their loved ones. One participant reported that social relationships changed after the diagnosis. Some friendships became closer and some friendships had ended due to lack of support. She specifically mentioned that her friends paid less attention to her disease and health status because of the term ‘benign disease’ which implies minor disease related issues or short course of disease. Discussion With this study, we aimed to gain more insight in HRQoL-issues and currently used HRQoL-tools in the setting of DTF. The results of this study can be seen as the first step towards developing a disease specific HRQoL-tool that can be used in clinical practice or research. The literature review identified several non-disease specific HRQoL-tools; no tool currently exists that assesses all issues relevant for DTF patients. Functional scores like the DASH score 24 , the Enneking score / MSTS 25-27, 38 , the TESS 38 , and the Johnstone scale 30 are used for extremity diseases but are not suitable for patients who have sites of disease other than the extremities. Symptoms scores including the MDASI score 29 and the NRS 31, 32 are quite specific for measuring the severity of symptoms, and could be useful in combination with HRQoL-tools measuring issues like emotional or social wellbeing. The EORTC QLQ-C30 19 is designed to cover issues relevant for cancer patients and may be a good generic measure to be completed by an item list consisting of the key DTF-specific issues identified in our focus groups, in order to create a more holistic perspective of HRQoL-issues in patients with DTF. The results of the literature review show that researchers are interested in measuring the effect of DTF and its treatment on functioning or pain, but no consensus exists with respect 8