Milea Timbergen

261 References 1 . Fletcher CDM, Bridge JA, PCWH, F M. World Health Organization, International Agency for Research on Cancer. WHO classification of tumours of soft tissue and bone. Press: Lyon: IARC; 2013 2013. 2 . World Health Organization International Classification of Disease XH13Z3 Aggressive fibromatosis: World Health Organization; 2018 [updated June 18 2018. Available from: https://icd.who.int/browse11/l-m/en#/http ://id.who.int/icd/entity/1314962913. 3 . van Broekhoven DL, Grunhagen DJ, den Bakker MA, van Dalen T, Verhoef C. Time trends in the incidence and treatment of extra-abdominal and abdominal aggressive fibromatosis: a population-based study. Ann Surg Oncol. 2015;22(9):2817-2823. 4 . Penel N, Le Cesne A, Bonvalot S, Giraud A, Bompas E, Rios M, et al. Surgical versus non-surgical approach in primary desmoid-type fibromatosis patients: A nationwide prospective cohort from the French Sarcoma Group. Eur J Cancer. 2017;83:125-131. 5 . Bonvalot S, Ternes N, Fiore M, Bitsakou G, Colombo C, Honore C, et al. Spontaneous regression of primary abdominal wall desmoid tumors: more common than previously thought. Ann Surg Oncol. 2013;20(13):4096-4102. 6 . Kasper B, Baumgarten C, Garcia J, Bonvalot S, Haas R, Haller F, et al. An update on the management of sporadic desmoid-type fibromatosis: A European Consensus Initiative between Sarcoma PAtients EuroNet (SPAEN) and European Organization for Research and Treatment of Cancer (EORTC)/Soft Tissue and Bone Sarcoma Group (STBSG). Ann Oncol. 2017;28(10):2399-2408. 7 . Posner MC, Shiu MH, Newsome JL, Hajdu SI, Gaynor JJ, Brennan MF. The desmoid tumor. Not a benign disease. Arch Surg. 1989;124(2):191-196. 8 . Crago AM, Denton B, Salas S, Dufresne A, Mezhir JJ, Hameed M, et al. A prognostic nomogram for prediction of recurrence in desmoid fibromatosis. Ann Surg. 2013;258(2):347-353. 9 . Gronchi A, Colombo C, Le Pechoux C, Dei Tos AP, Le Cesne A, Marrari A, et al. Sporadic desmoid- type fibromatosis: a stepwise approach to a non-metastasising neoplasm--a position paper from the Italian and the French Sarcoma Group. Ann Oncol. 2014;25(3):578-583. 10 . Gundle KR, Cizik AM, Jones RL, Davidson DJ. Quality of life measures in soft tissue sarcoma. Expert Review of Anticancer Therapy. 2015;15(1):95-100. 11 . Gounder MM, Mahoney MR, Van Tine BA, Ravi V, Attia S, Deshpande HA, et al. Sorafenib for Advanced and Refractory Desmoid Tumors. N Engl J Med. 2018;379(25):2417-2428. 12 . Timbergen MJM, van de Poll-Franse LV, Grunhagen DJ, van der Graaf WT, Sleijfer S, Verhoef C, et al. Identification and assessment of health-related quality of life issues in patients with sporadic desmoid- type fibromatosis: a literature review and focus group study. Qual Life Res. 2018;27(12):3097-3111. 13 . Husson O, Younger E, Dunlop A, Dean L, Strauss DC, Benson C, et al. Desmoid fibromatosis through the patients’ eyes: time to change the focus and organisation of care? Support Care Cancer. 2018;27(3):965-980. 14 . Johnson C, Aaronson N, Blazeby JM, Bottomley A, Fayers P, Koller M, et al. Guidelines for Developing Questionnaire Modules. On Behalf of EORTC Quality of Life Group. 2011. 15 . Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365-376. 16 . Nolte S, Liegl G, Petersen MA, Aaronson NK, Costantini A, Fayers PM, et al. General population normative data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons across 13 European countries, Canada and the Unites States. Eur J Cancer. 2018;107:153-163. 17 . The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 Scoring Manual 2001 Available from: https://www.eortc.org/app/uploads/sites/2/2018/02/SCmanual.pdf. 18 . Giesinger JM, Kieffer JM, Fayers PM, Groenvold M, Petersen MA, Scott NW, et al. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79-88. 9