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. 2024 Dec;33(12):3189-3211.
doi: 10.1007/s11136-024-03755-4. Epub 2024 Sep 11.

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

Jasmijn D Generaal  1 , Marnix R Jansen  2 , Goudje L van Leeuwen  3 , Robert J van Ginkel  2 , Lukas B Been  2 , Barbara L van Leeuwen  2
Affiliations

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

Jasmijn D Generaal et al. Qual Life Res. 2024 Dec.

Abstract

Purpose: As the importance of the patient's perspective on treatment outcome is becoming increasingly clear, 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 (STSs). The objectives of this systematic review were (1) to identify all PROMs used in STS patients and (2) to critically appraise the methodological quality of these PROMs.

Methods: Literature searches were performed in MEDLINE and Embase on April 22, 2024. PROMs were identified by including all studies that evaluate (an aspect of) health-related quality of life in STS patients by using a PROM. Second, studies that assessed measurement properties of the PROMs utilized in STS patients were included. Quality of PROMs was evaluated by performing a COSMIN analysis.

Results: In 59 studies, 39 PROMs were identified, with the Toronto Extremity Salvage Score (TESS) being the most frequently utilized. Three studies evaluated methodological quality 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 utilized in the STS population can be recommended for use based on the current evidence and COSMIN analysis.

Conclusion: To ensure collection of reliable outcomes, PROMs require methodological evaluation prior to utilization in the STS population. Research should prioritize on determining relevant content and subsequently selecting the most suitable PROM for assessment.

Keywords: COSMIN; Consensus-based Standards for the Selection of Health Measurement Instruments; Patient-reported outcome; Patient-reported outcome measure; Review; Soft-tissue sarcoma.

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Conflict of interest statement

Declarations. Conflict of interest: The authors declare that no funds, grants or other support were received during the preparation of this manuscript. The authors have no relevant financial or non-financial interests to disclose.

Figures

Fig. 1
Fig. 1
Overview of the composition of the search strategy for the identification of PROMs (search 1) and the search strategy for the methodological evaluation of PROMs (search 2)
Fig. 2
Fig. 2
Flow diagram of search 1
Fig. 3
Fig. 3
Flow diagram of search 2
Fig. 4
Fig. 4
The frequency of constructs evaluated in the included studies per year of publication
See this image and copyright information in PMC

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