The need for improved patient reported outcome measures in patients with extremity sarcoma: A narrative review

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.