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Who is the PROM King? Patient-reported Outcome Measures in Pediatric Musculoskeletal Oncology: A Systematic Review
Soroush Baghdadi1,2, David Van Eenenaam2, Divya Talwar2
1Department of Orthopedic Surgery, University of California Los Angeles, Los Angeles, CA.
Insights
This systematic review found minimal consensus on patient-reported outcome measures (PROMs) for pediatric musculoskeletal oncology. Widely used, disease-specific PROMs like the Musculoskeletal Tumor Society score are recommended over less common instruments.
Area of Science:
- Pediatric Oncology
- Musculoskeletal Oncology
- Health Outcomes Research
Background:
- Patient-reported outcome measures (PROMs) are crucial complements to physician-reported data in clinical practice.
- Assessing PROMs in pediatric musculoskeletal oncology is vital for comprehensive patient care.
- This study systematically reviewed and evaluated PROMs used in this specific patient population.
Purpose of the Study:
- To systematically identify and evaluate patient-reported outcome measures (PROMs) utilized in pediatric musculoskeletal oncology.
- To assess the quality and applicability of existing PROMs for this patient group.
- To provide recommendations for optimal PROM selection in pediatric musculoskeletal oncology.
Main Methods:
- Conducted a systematic literature review of studies published between 2010 and 2024 focusing on pediatric musculoskeletal tumors.
- Included papers were screened by two experts to identify relevant PROMs.
- The top 10 most frequently used PROMs were evaluated using the Evaluating Measures of Patient-Reported Outcomes (EMPRO) tool.
Main Results:
- A total of 316 publications yielded 82 unique PROMs; 24% of papers reported no PROMs, and 67% of instruments were used only once.
- Nine of the top 10 PROMs met minimum acceptable criteria (EMPRO score >50).
- Disease-specific instruments like Musculoskeletal Tumor Society, Toronto Extremity Salvage Score, Disabilities of the Arm, Shoulder, and Hand (DASH), and Quick DASH scored highly, as did several general instruments (e.g., SF-36, PedsQL). Short Form-12 performed poorly.
Conclusions:
- There is a lack of consensus regarding the ideal PROM for pediatric musculoskeletal oncology.
- The study recommends prioritizing widely used, disease-specific instruments (e.g., MSK, TESS, DASH, Quick DASH) over obscure ones.
- While disease-specific instruments show promise, consensus on general instruments is lacking, with Patient-Reported Outcomes Measurement Information System (PROMIS) emerging as a potential future standard.
Background:
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.
Methods:
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.
Results:
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.
Conclusions:
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 Of Evidence:
Level IV-systematic review of level II to IV studies.
