Unravelling the heterogeneity of soft tissue and bone sarcoma patients' health-related quality of life: a systematic literature review with focus on tumour location

Patients with sarcoma experience many physical and psychological symptoms, adversely affecting their health-related quality of life (HRQoL). HRQoL assessment is challenging due to the diversity of the disease. This review aims to unravel the heterogeneity of HRQoL of patients with sarcoma with regard to tumour location and to summarise the used measures in research. English-language literature from four databases published between January 2000 and April 2019 was reviewed. Studies that described adult sarcoma HRQoL outcomes were included and classified according to primary sarcoma location. Eighty-seven articles met the inclusion criteria covering sarcoma of the extremities (n=35), pelvis and axial skeleton (n=9), pelvis and extremities (n=5), head and neck (n=4), retroperitoneum (n=2) and multiple sarcoma locations (n=33), respectively. Urogenital and thoracic sarcoma were lacking. Fifty-four different questionnaires were used, most often cancer-generic or generic HRQoL questionnaires. Patients with sarcoma reported lower HRQoL than the general population. Distinctive patterns of HRQoL outcomes according to tumour location regarding symptoms, physical functioning, disability and psychosocial well-being were identified. In metastatic sarcoma, mostly constitutional symptoms were present. To comprehensively assess HRQoL, a sarcoma-specific measurement strategy should be developed and used covering the heterogeneity of sarcoma including location-specific issues to improve personalised HRQoL assessment in future research and clinical practice.