International consensus on outcome measurement instruments on pain in adults with cerebral palsy, a Delphi study
Pain diagnosis and assessment in adults with cerebral palsy
The prevalence of pain is known to be high (70%) in adults with cerebral palsy (CP), but international consensus is lacking on Outcome Measurement Instruments (OMIs) specific to pain in adults with CP. Aim of this study is to reach international consensus on the most applicable and feasible OMI for adults with CP. We performed a systematic literature review on outcome measurements on pain in adults with CP followed by a Delphi study with an international expert panel. The panel comprised 13 professionals of multiple disciplines and persons with CP from nine countries worldwide.
Experts of the Delphi study were informed on outcomes on pain in adults with CP that were identified from the systematic literature review. This information summarized the methodological quality of the studies and the quality of the 54 identified OMIs according to the COSMIN guidelines.
In three rounds consensus of more than 70% was reached on OMIs assessing (general) pain in adults with CP and for the specific subgroups of adults with intellectual disability (ID), and non-verbal adults with ID; they rated these OMIs as highly applicable for adults with CP. Additionally, the panel reached consensus on OMIs assessing four specific aspects of pain: pain intensity; pain interference; body location and nature of pain.
The selected OMIs are recommended to use in clinical practice and systematic follow-up studies. Based on international consensus, the present study contributes to increased standardization of OMIs to assess pain in adults with CP worldwide.
Wilma van der Slot
1-4-2020 / 1-4-2021
Clinical focus area
Pediatric Rehabilitation (Lifespan)