Patient reported outcomes in brachial plexus birth injury: results from the iPLUTO world-wide consensus survey
Hazel Brown1, Ruth van der Looven2, Emily S Ho3
1Peripheral Nerve Injury Unit, Royal National Orthopaedic Hospital, Stanmore, London and Clinical Research Fellow, Centre for Nerve Engineering, University College London, London, UK.
Insights
Patient-reported outcome measures are crucial for evaluating brachial plexus birth injuries (BPBI) in children. International experts recommend specific tools for assessing upper limb function, quality of life, and pain to improve treatment comparisons.
Area of Science:
- Pediatric medicine
- Orthopedic surgery
- Rehabilitation medicine
Background:
- Brachial plexus birth injuries (BPBI) significantly impact upper extremity development and function.
- Lack of consensus on patient-reported outcome (PRO) measures hinders treatment comparison across institutions.
- Standardized PROs are needed to effectively evaluate interventions for BPBI.
Purpose of the Study:
- To achieve consensus among international clinicians on the most appropriate PRO measures for children with BPBI.
- To facilitate standardized assessment and comparison of treatments and outcomes for BPBI.
- To identify reliable PRO tools for evaluating functional use, quality of life, and pain in pediatric BPBI patients.
Main Methods:
- A 3-round Delphi survey was conducted online.
- 35 international multi-disciplinary specialist centers participated in the survey.
- Expert opinions were gathered on the utility and specificity of various PRO measures.
Main Results:
- 100% of respondents affirmed the clinical utility of PRO measures for BPBI.
- No single PRO measure achieved >75% agreement for assessing responsiveness or current state in BPBI.
- Recommended PROs include the Brachial Plexus Outcome Measure - Self-Evaluation, Pediatric Quality of Life Inventory, and Visual Analogue Scale/Brief Pain Inventory.
Conclusions:
- International specialists agree on the importance of PRO measures for clinical practice and research in BPBI.
- Consensus was reached on specific PROs for assessing upper limb function, quality of life, and pain in children aged 5 and above.
- Standardized PRO use will improve the ability to compare treatments and outcomes for brachial plexus birth injuries.
Purpose:
Brachial plexus birth injuries (BPBI) can have lifelong effects on the development and functional use of the upper extremity. Currently there is no agreement with regards to what patient-reported outcome (PRO) measures should be used. Therefore, the ability to compare the effects of treatment between individuals and institutions is challenging. This study aimed to achieve consensus among clinicians on the use of PRO measures within this patient group to allow for improved comparison of treatments and outcomes in the future.
Materials And Methods:
Online, a 3 round Delphi survey was completed by 35 international multi-disciplinary specialist centers.
Results:
All respondents (100%) agreed that PRO measures are useful for clinical evaluation and patient treatment. None of the outcome measures scored >75% agreement for ability to assess responsiveness and current state in children with BPBI as most outcome measures were judged as not specific for BPBI. Additionally, participant centers were asked their perspective on the best available PRO option for each of the 3 categories: functional use of the upper limb, quality of life and pain. This resulted in endorsement by the participant centers of the Brachial Plexus Outcome Measure - Self-Evaluation, the Pediatric Quality of Life Inventory, and Visual Analogue Scale/Brief Pain Inventory respectively.
Conclusion:
International specialists in BPBI agree that PRO measures are important to use both clinically and in research in children aged 5 years and above.
