Symptom Burden, Survival and Palliative Care in Advanced Soft Tissue Sarcoma

Abstract

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.

Symptom burden and medication use in adult sarcoma patients

“…One study suggested that 53 % of patients with soft tissue sarcoma (STS) experienced pain at the time of assessment, of whom more than half had pain that was described as inadequately controlled [6]. Another study has shown that pain (50-82 %), dyspnea (20-40 %), and nausea and vomiting (18-22 %) were the most prevalent symptoms experienced by patients with locally advanced and metastatic STS [7]. Certain symptoms, such as dyspnea, are often undertreated [7].…”

“…Another study has shown that pain (50-82 %), dyspnea (20-40 %), and nausea and vomiting (18-22 %) were the most prevalent symptoms experienced by patients with locally advanced and metastatic STS [7]. Certain symptoms, such as dyspnea, are often undertreated [7]. As sarcoma patients receive complex systemic treatment, it may be challenging for these patients to experience complete symptom control, and inadequate control of disease or treatment-related symptoms may have a negative impact on patients' HRQoL [8].…”

REGOSARC: Regorafenib versus placebo in doxorubicin‐refractory soft‐tissue sarcoma—A quality‐adjusted time without symptoms of progression or toxicity analysis

“…This justifies early supportive/palliative‐care interventions. The data assessing the quality of life of patients with advanced STS are sparse 5, 6, 7, 8, 11. The evidence demonstrating that systemic treatment decreases the symptom burden in patients with advanced sarcoma is missing.…”

“…However, data supporting the clinical benefit of palliative systemic treatment in advanced STS are sparse 6, 7, 8. In the current study, we analyzed the impact of regorafenib on quality of life with a modeling approach based on the quality‐adjusted time without symptoms of progression or toxicity (Q‐TWiST) 9, 10.…”

Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

“…What is important to patients-in both seeking to communicate 'how well they survive' and in seeking to understand the benefits (and side effects) of treatment-is their quality of life over time, not at a solitary point in time (particularly when so much changes following hospital discharge). Growing awareness of the discrepancies that exist between outcomes defined by a non-patient population versus those defined by patients living with a health condition has resulted in a move towards the greater involvement of patients in the identification of important outcomes [4][5][6]. The importance (and challenges) of engaging with multiple perspectives-including patients-in defining what to measure in clinical trials and routine practice settings is increasingly evident in the development of core outcome sets (COS) [7] (http://www.comet-initiative.org).…”