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

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. MethodsA MEDLINE database search was conducted on 18 August 2020, abstracts and full texts were screened against the following criteria: PopulationUpper and lower extremity sarcoma patients treated with surgery. OutcomePreviously validated PROMs. Studies considering paediatricspecific PROMs and patients with non-extremity sarcoma were excluded. Study typeCase studies, validation of non-PROM measures, and publications unavailable in English were excluded. To allow thorough analysis

Determining functional outcomes after resection and reconstruction of primary soft tissue sarcoma in the lower extremity: A review of current subjective and objective measurement systems

“…Despite its advantages and superiority over other PROMs in assessing functional outcome, the TESS remains solely a subjective measure and given that it was developed almost 20 years ago, its applicability for the modern environment has been questioned. Blight and Choong in particular suggested that it should be further refined to accommodate more recent surgical innovations, 39 a common theme across most subjective methods of functional outcome assessment.…”

Pediatric and Adult Patients Have Similar Functional Improvement After Endoprosthetic Reconstruction of Lower-Extremity Tumors

“…Direct comparisons of outcomes between pediatric and adult patients undergoing similar oncologic procedures are lacking 11,12 . Although it is common for a parent or guardian to provide patient-reported outcomes on the behalf of a pediatric patient, prior studies have shown that children as young as 5 years old can accurately self-report on health-related qualityof-life instruments and the results are superior to reports made by proxy [13][14][15][16] .…”