The need for improved patient reported outcome measures in patients with extremity sarcoma: a narrative review
Thomas J. Blight, Peter Choong
Abstract
BACKGROUND: Extremity sarcoma causes impairments to functionality and quality of life. Patient-reported outcome measures (PROMS) assess patient perspectives relating to domains of health and quality of life. METHODS: To describe PROMs utilised in extremity sarcoma, the available literature was screened for studies that utilised PROMs to evaluate outcomes in extremity sarcoma following surgery. RESULTS: Seventy articles met eligibility criteria; six PROMs were identified. The Toronto Extremity Salvage Score, The Short-Form 36, The EORTC QLQ-C30, The Disabilities of the Arm, Shoulder and Hand questionnaire, the Reintegration to Normal Living index and the Patient-Reported Outcomes Measurement Information System. Most sarcoma patients score well in these tools, with bone sarcoma, and extent of resection being predictors of poor outcomes. CONCLUSION: TESS is the only sarcoma-specific PROM, and though a valid assessment of functionality, it has difficulty differentiating patients with minor functional impairments. The absence of a disease-specific measure of health is concerning, as generic tools do not account for the unique experiences sarcoma patients face and may impair their accuracy in analysing intervention effectiveness.