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Evaluating the Use of PROMs in Paediatric Orthopaedic Registries
Eleanor J Morris1,2, Kelly Gray3, Paul J Gibbons2
1Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney 2006, Australia.
Insights
Patient-reported outcome measures (PROMs) are crucial for pediatric orthopaedics. However, most registries use unvalidated PROMs, limiting their effectiveness in improving care for young patients.
Area of Science:
- Orthopaedic Surgery
- Health Outcomes Research
- Pediatric Health
Background:
- Patient-reported outcome measures (PROMs) are vital for assessing patient health and guiding clinical decisions.
- Orthopaedic registries increasingly use PROMs for adults, but their application in pediatric populations is less understood.
- PROMs enhance understanding of clinical trajectories and intervention effectiveness.
Purpose of the Study:
- To systematically review the frequency and scope of PROMs collection in pediatric orthopaedic registries.
- To identify existing registries and the PROMs they utilize for patients under 18.
- To assess the validation status of PROMs used in pediatric orthopaedic research.
Main Methods:
- A systematic literature search was conducted across six databases in July 2023.
- Identified studies focused on registries collecting PROMs from pediatric patients (<18 years) with orthopaedic conditions.
- Data extraction focused on registry type, PROMs used, and their validation status.
Main Results:
- 128 unique registries were identified from 3190 articles; only 3 were exclusively pediatric.
- 72 different PROMs were collected across registries, with 58% lacking pediatric validation.
- Knee ligament injuries were the most common focus (21%) for PROMs collection.
Conclusions:
- Dedicated pediatric orthopaedic registries collecting validated PROMs are scarce.
- The widespread use of non-validated PROMs in pediatric registries hinders their clinical utility and impact.
- Development and implementation of validated pediatric PROMs are essential for advancing knowledge and optimizing care.
Abstract:
Patient-reported outcome measures (PROMs) provide structured information on the patient's health experience and facilitate shared clinical decision-making. Registries that collect PROMs generate essential information about the clinical course and efficacy of interventions. Whilst PROMs are increasingly being used in adult orthopaedic registries, their use in paediatric orthopaedic registries is not well known. The purpose of this systematic review was to identify the frequency and scope of registries that collect PROMs in paediatric orthopaedic patient groups. In July 2023, six databases were systematically searched to identify studies that collected PROMs using a registry amongst patients aged under 18 years with orthopaedic diagnoses. Of 3190 identified articles, 128 unique registries were identified. Three were exclusively paediatric, 27 were majority paediatric, and the remainder included a minority of paediatric patients. One hundred and twenty-eight registries collected 72 different PROMs, and 58% of these PROMs were not validated for a paediatric population. The largest group of orthopaedic registries collected PROMs on knee ligament injuries (21%). There are few reported dedicated orthopaedic registries collecting PROMs in paediatric populations. The majority of PROMs collected amongst paediatric populations by orthopaedic registries are not validated for patients under the age of 18 years. The use of non-validated PROMs by registries greatly impedes their utility and impact. Dedicated orthopaedic registries collecting paediatric-validated PROMs are needed to increase health knowledge, improve decision-making between patients and healthcare providers, and optimise orthopaedic management.
