Abstract
Patient-reported outcome measures (PROMs) are important companions to traditional, physician-reported measures. The purpose of this study was to systematically review and identify PROMs used in pediatric musculoskeletal oncology and evaluate these instruments. A systematic literature review was conducted for studies pertaining to pediatric musculoskeletal tumors from 2010 to 2024. Two experts selected eligible papers for inclusion through a systematic approach. PROMs used in the eligible papers were cataloged, and the top 10 most frequently used instruments were evaluated with Evaluating Measures of Patient-Reported Outcomes (EMPRO), which is a standardized evaluation tool for PROs. A total of 316 publications were included in the final analysis, reporting a total of 82 unique PROMs. Of the papers, 24% reported no PROMs, whereas 67% of the instruments were only reported once. Nine out of the 10 top PROMs scored over 50 on EMPRO, meeting the minimum acceptable criteria. Musculoskeletal Tumor Society, Toronto Extremity Salvage Score, Disabilities of the Arm, Shoulder, and Hand (DASH), and Quick DASH were disease-specific instruments scoring high on EMPRO. Short Form-36, Pediatric Quality of Life Questionnaire, Quality of Life Questionnaire-30, BSI-18, and TNO AZL Child Quality Of Life met the requirements in the general instruments. Short Form-12 was the lowest-scored PROM. Our results show minimal consensus on the ideal PROM in pediatric musculoskeletal oncology. We recommend using instruments that are already in widespread use instead of obscure PROMs, which defy the purpose of reporting outcomes from a patient perspective. All 4 disease-specific instruments scored highly and are already widely used, including Musculoskeletal Tumor Society, Toronto Extremity Salvage Score, DASH, and Quick DASH. However, we found no consensus on general instruments. With the development and increasing popularity of Patient-Reported Outcomes Measurement Information System, it may replace other general instruments that are proprietary, unreliable, or not developed with pediatric patients in mind. Level IV-systematic review of level II to IV studies.
Published Version
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