Health-related quality of life issues experienced by thoracic and breast sarcoma patients : a rare and understudied group

van Eck, Ilse and Den Hollander, Dide and Lidington, Emma and Hentschel, Leopold and Eichler, Martin and Salah, Samer and Singer, Susanne and Pinto, Monica and Fauske, Lena and Fiore, Marco and Nixon, Ioanna and Constantinidou, Anastasia and Desar, Ingrid M.E. and Bonenkamp, Johannes J. and van Houdt, Winan J. and Reuvers, Milou J.P. and Haas, Rick L.M. and Bruland, Øyvind S. and Kasper, Bernd and van der Graaf, Winette T.A. and Husson, Olga (2021) Health-related quality of life issues experienced by thoracic and breast sarcoma patients : a rare and understudied group. Journal of Clinical Medicine, 10 (22). 5334. ISSN 2077-0383 (

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Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm height were specific physical issues for breast sarcoma patients, whereas respiratory problems were only mentioned by thoracic sarcoma patients. Body image issues, changes in mood, fear of recurrence, and living with uncertainty were important mental health issues for both subgroups. Social issues in both groups included challenges in work and relationships, financial difficulties, loss of independence, and limitations in social activities. The identified physical, mental, and social health challenges can significantly impact thoracic and breast sarcoma patients’ HRQoL. Results of this qualitative study will guide personalised supportive care for breast and thoracic sarcoma patients and help in determining the best possible HRQoL measurement strategy for sarcoma patients with different primary sarcoma locations.