Milea Timbergen

228 The Disabilities of the Arm, Shoulder and Hand (DASH) score is a 30-item questionnaire designed to evaluate disability of the upper limb region by measuring symptoms and physical functions with 5 response options and higher scores reflecting greater disability 24, 25, 36, 37 . The Enneking/ Musculoskeletal Tumor Society (MSTS) score comprises six categories: pain, function and emotional acceptance of both lower and upper extremities, support, walking and gait of the lower extremities and hand positioning, dexterity and lifting ability in the upper extremity, for which patients have to assign values ranging from 0 to 5 points. Higher values indicate better functioning 25-27, 38, 39 . The European Organisation for Research and Treatment of Cancer quality of life questionnaire C30 (EORTC QLQ- C30) is a 30-item, cancer-specific questionnaire designed for evaluating quality of life incorporating five functional scales, symptom scales and global health and quality of life scales 19, 40 . The MD Anderson Symptom Inventory (MDASI) measures the severity of 13 cancer-related symptoms experienced by the patient during the previous 24 hours. The score rates symptoms on an 11-point scale; higher scores reflect more severe symptoms 29, 41 . The (modified) Johnstone scale provides a functional grading system with grades ranging from 0 to 4, higher scores reflect fewer limitations 30, 42 . The Numerical Rating Scale (NRS) is used for self-reporting subjective conditions, currently in use for several symptoms. Symptoms are rated on a 0 to 10 scale; higher scores reflect more severe symptoms 31, 32, 43 . The Toronto Extremity Salvage score (TESS) is internationally used for measuring functional outcome and physical disability in patients with extremity tumours undergoing limb preservation surgery. This questionnaire consists of 29 (upper extremity) or 30 (lower extremity) questions regarding daily activities. Each item is rated on a scale from 1-5, higher values represent better function 38, 44, 45 . Other identified measures and questionnaires included items related to functional impairment, pain and cosmetic outcome (Table 1.) 33-35 . Focus group In total, 45 patients were approached to participate; 22 patients agreed to receive written information, 15 patients could not be reached by telephone. Reasons for refusal included not willing to participate in a group experience but willing to do a personal interview, not available at pre-set dates, language barrier or not willing to participate because of minimal symptoms. A total of 15 patients participated in the focus groups. The first group consisted of five female participants with a median age of 37 years (range: 25-60 years), the second group consisted of five male participants with a median age of 62 (range: 37-75 years), the third group was a mixed sex group with a median age of 37 years (range: 36-53 years). 8