Priorities for traumatic brachial plexus Injury research: a James Lind Alliance priority setting partnership.

INTRODUCTION

Traumatic brachial plexus injuries (TBPI) are life-changing and can lead to permanent changes in function and pain within the arm and hand. Historically, TBPI research has reflected the priorities of researchers and clinicians rather than those with personal experience of living with a TBPI. The James Lind Alliance (JLA), supported by the National Institute for Health Research, has developed a rigorous methodology for increasing public engagement in research by giving an equal voice to patients, carers, and healthcare providers to ensure that their concerns are represented in future health research programmes. These projects are called priority setting partnerships (PSPs).

METHODS

A JLA PSP, comprising patients, carers and clinicians, was created and completed to agree future research priorities in adult TBPI. The JLA PSP methodology was followed throughout.

RESULTS

One-hundred and fifty-four respondents replied to an initial survey generating 704 questions. These were assessed, grouped and combined to create 68 summary questions or 'uncertainties'. Three were excluded after literature review suggested they had already been answered by research. Seventy-nine respondents answered an interim prioritization survey, choosing their top ten from the summary questions. In a workshop, nine patients, two carers and 11 clinicians met, discussed and ranked the top 22 questions from the interim survey to identify the top 10 research priorities. Psychology, physical therapy treatments and management pathways were among the top ranked priorities.

CONCLUSION

These results will inform researchers and funding bodies about research priorities for patients, carers and clinicians to direct future research on TBPI.

LEVEL OF EVIDENCE: V.