Patient reported outcomes in brachial plexus birth injury: results from the iPLUTO world‐wide consensus survey

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. Online, a 3 round Delphi survey was completed by 35 international multi-disciplinary specialist centers. 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. International specialists in BPBI agree that PRO measures are important to use both clinically and in research in children aged 5 years and above. Patient-reported outcome measures were judged as useful both in clinic and in research for brachial plexus birth injury (BPBI), according to a panel of specialized centers.Currently available outcome measures were judged as not specific for BPBI.The panel endorsed the following measures as best available: the Brachial Plexus Outcome Measure – Self-Evaluation scale for functional evaluation, the Pediatric Quality of Life Inventory for disease-related quality of life and the Faces Pain Scale - Revised/Visual Analogue Scale/Brief Pain Inventory for pain Patient-reported outcome measures were judged as useful both in clinic and in research for brachial plexus birth injury (BPBI), according to a panel of specialized centers. Currently available outcome measures were judged as not specific for BPBI. The panel endorsed the following measures as best available: the Brachial Plexus Outcome Measure – Self-Evaluation scale for functional evaluation, the Pediatric Quality of Life Inventory for disease-related quality of life and the Faces Pain Scale - Revised/Visual Analogue Scale/Brief Pain Inventory for pain