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Sarcoma

E431: Twenty-five years of experience with patient reported outcome measures in soft-tissue sarcoma patients: a systematic review.

Introduction: The importance of the patient's perspective on treatment outcome is becoming increasingly clear. Thus, the availability of patient-reported outcome measures (PROMs) has grown accordingly. There remains insufficient information regarding the quality of PROMs in patients with soft-tissue sarcomas (STS). The objective of this systematic review was to identify all PROMs used in the STS population and to critically appraise the quality of these PROMs.

Methods: In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement and Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) methodology, MEDLINE and Embase were searched twice, on 2-2-2023 and 28-6-2023. PROMs were identified by including studies that evaluated patient-reported outcome (PRO) in the STS population. Second, studies that reported on measurement properties of the PROMs utilized in the STS population were included. Data were extracted and compared to criteria for good measurement properties.

Results: Thirty-five PROMs were identified in 53 studies. The Toronto Extremity Salvage Score (TESS) was used most often, in 26 studies. Three studies evaluated the measurement properties of PROMs in the STS population. Measurement properties of the TESS, Quick Disability of the Arm, Shoulder and Hand (QuickDASH) and European Organization for Research and Treatment for Cancer Quality of Life Questionnaire (EORTC-QLQ-C30) were reported. None of the PROMs researched met quality standards according to the COSMIN criteria.

Conclusions: Of the 35 PROMs employed in patients with STS, only three have documented measurement properties, and these have demonstrated limited effectiveness in measuring PROs. To ensure collection of reliable PROs, research is needed to define relevant topics and validate existing PROMs within the STS population.

Learning Objectives:

  • Upon completion, participants will be able to describe the constructs that have been assessed in the soft-tissue sarcoma population, allowing them to identify gaps of knowledge regarding patient-reported outcomes.
  • Upon completion, participants will have a comprehensive understanding of the methods to qualitatively appraise patient-reported outcome measures and understand the significance of evaluating these measures to obtain reliable patient-reported outcomes.
  • Upon completion, participants will have insight in the quality of patient-reported outcome measures utilized in soft-tissue sarcoma patients, enabling them to judge outcomes of studies that have employed these measures.