The comprehensibility and feasibility of the modified brief pain inventory and fear of pain questionnaire adapted for children and young people with cerebral palsy.

Purpose: To test the comprehensibility and feasibility of the modified brief pain inventory (mBPI) and Fear of Pain Questionnaire for Children short-form (FOPQ-C-SF) adapted for children and young people with cerebral palsy (CP), with diverse cognitive and communication abilities. Improving assessment of pain interference (mBPI) and pain-related fear (FOPQ-C-SF) in CP can enhance quality of life by increasing access to under-utilised interventions targeting pain-related physical disability and mental health.

Methods: A convergent mixed methods approach was used. Twenty-two people (5-30 years) with CP completed the adapted mBPI and FOPQ-C-SF in a cognitive interview, administered by pen/paper or TalkingMats^®, an evidence-based visual communication framework. Cognitive interviewing approaches were adapted to optimise participation and expression for diverse cognitive and communication abilities. Quantitative data were analysed to report tool administration times, overall completion rates and communication effectiveness. Qualitative data were analysed by content analysis to determine further changes required to the tools.

Results: Median administration times were 6.2 min (IQR = 5.3-7.6) for mBPI and 4.1 min (IQR = 2.7-4.9) for FOPQ-C-SF. All completed the mBPI. Three did not complete the FOPQ-C-SF due to fatigue, challenging behaviour and parent recommendation. Ten minor changes were identified.

Conclusion: The adapted mBPI and FOPQ-C-SF are likely comprehensible and feasible for children and young people with CP, including those with diverse cognitive and communication abilities. It is likely most children and young people with CP can effectively communicate responses to both tools. The adapted tools will now undergo further psychometric testing, prior to becoming freely available for clinical and research use.