The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature

To evaluate how functional disability impacts on health related quality of life (HRQOL) of patients with extremity soft tissue sarcoma (STS) at 1 year post-surgery. Survey of extremity STS patients pre-surgery and one-year post-treatment. 100 participants who were treated for extremity STS between 2001 and 2003 at four Canadian hospitals. Patients were over 16 years, non-metastatic at diagnosis, and had limb salvage surgery. Musculoskeletal Tumor Society Rating Scale (MSTS), a measure of impairment; Toronto Extremity Salvage Score (TESS), a measure of activity limitations; Reintegration to Normal Living Index (RNL), a measure of participation restrictions; and EQ-VAS, a measure of HRQOL. After adjusting for demographic and clinical variables, impairment explained 54%, activity limitations explained 48%, and participation restrictions explained 61% of the variation in HRQOL. After adjustment, when all three functional measures were included in the model, only participation restrictions had a significant impact on HRQOL explaining 63% of the variation. Impairment and activity limitations affect the daily activities a patient can perform, but it is the restriction in participation of life roles and situations that has the greatest effect on patient's HRQOL.

The aim of the study was to assess health-related quality of life (HRQoL) among metastatic soft tissue (mSTS) or bone sarcoma (mBS) patients who had attained a favourable response to chemotherapy. We employed the EORTC QLQ-C30, the 3-item Cancer-Related Symptoms Questionnaire, and the EQ-5D instrument. HRQoL was evaluated overall and by health state in 120 mSTS/mBS patients enrolled in the SABINE study across nine countries in Europe and North America. Utility was estimated from responses to the EQ-5D instrument using UK population-based weights. The mean EQ-5D utility score was 0.69 for the pooled patient sample with little variation across health states. However, patients with progressive disease reported a clinically significant lower utility (0.56). Among disease symptoms, pain and respiratory symptoms are common. This study showed that mSTS/mBS is associated with reduced HRQoL and utility among patients with metastatic disease.

Introduction. The symptom burden and role of palliative care (PC) in patients with advanced soft tissue sarcoma (STS) are not well defined. Methods. This study retrospectively reviewed both symptoms and PC involvement in patients known to an STS referral centre who died in one calendar year. Results. 81 patients met inclusion criteria of which 27% had locally advanced disease and 73% metastases at initial referral. The median number of symptoms was slowly progressive ranging from 2 (range 0–5) before first-line chemotherapy (n = 50) to 3 (range 1–6) at the time of best supportive care (BSC) decision (n = 48). Pain and dyspnoea were the commonest symptoms. Median overall survival from BSC decision was 3.4 weeks. 88% had PC involvement (either hospital, community, or both) with median time from first PC referral to death of 16 (range 0–110) weeks. Conclusions. Patients with metastatic STS have a significant symptom burden which justifies early PC referral. Pain, including neuropathic pain, is a significant problem. Dyspnoea is common, progressive and appears to be undertreated. Time from BSC decision to death is short, and prospective studies are required to determine whether this is due to overtreatment or very rapid terminal disease progression.