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Abstract
The assessment of health-related quality of life (HRQL) via patient-reported outcomes has the potential to answer critical questions and improve the care of soft tissue sarcoma (STS). This review outlines the rationale for quality of life measures in sarcoma, and details various instrument types: disease- and anatomic-specific, provider-generated, generic HRQL and health state utilities. Prior usage in STS populations, relative advantages of specific patient-reported outcome measures and a framework for selecting appropriate measures are discussed. Uniform incorporation of validated HRQL measures in STS clinical research would further the understanding of patient wellbeing beyond traditional clinical measures, and more widespread use of health state utilities measures in particular has the potential to facilitate comparative effectiveness research.
Financial & competing interests disclosure
The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.
No writing assistance was utilized in the production of this manuscript.
Patient-reported outcomes provide evidence on health-related quality of life beyond what is gained from traditional oncology endpoints of recurrence, response and survival.
For soft tissue sarcoma, there are validated measures in several categories: disease-specific, general health and preference-based. Each type of measure has advantages, depending on the information required, and can be complementary.
The widely reported Musculoskeletal Tumor Rating Score is a provider-determined rather than patient-determine score, which creates potential for bias and limits its usefulness to measure health-related quality of life.
HSU combine a single measure of health with population-level preferences for a wide range of health states, and facilitate comparative effectiveness research.
Available guidelines can help select meaningful patient-reported outcome measures that are valid in the population of interest, while limiting the time burden to respondents to avoid survey fatigue.
Increasing use of quality of life measures may help answer questions that are important to sarcoma patients and providers about the use of chemotherapy, balancing surgical margins with extremity function and surveillance.