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

• Published in: Quality of life research Vol. 33; no. 12; pp. 3189 - 3211
• Main Authors: Generaal, Jasmijn D., Jansen, Marnix R., van Leeuwen, Goudje L., van Ginkel, Robert J., Been, Lukas B., van Leeuwen, Barbara L.
• Format: Journal Article
• Language: English
• Published: Cham Springer International Publishing 01.12.2024; Springer Nature B.V
• Subjects: Clinical outcomes; Humans; Medicine; Medicine & Public Health; Patient Reported Outcome Measures; Patients; Psychometrics; Public Health; Quality of Life; Quality of Life Research; Review; Sarcoma - psychology; Sarcoma - therapy; Sociology; Surveys and Questionnaires; Systematic review; Patient-reported outcome; Consensus-based Standards for the Selection of Health Measurement Instruments; Review; Soft-tissue sarcoma; Patient-reported outcome measure; COSMIN
• ISSN: 0962-9343; 1573-2649; 1573-2649
• DOI: 10.1007/s11136-024-03755-4

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.