Evaluating pain in cerebral palsy: comparing assessment tools using the International Classification of Functioning, Disability and Health

Abstract

Purpose: Pain is prevalent and affects functioning and quality of life of children with cerebral palsy (CP). However, pain in CP is under recognized. The International Classification of Functioning, Disabiity and Health (ICF) guides the selection of comprehensive chronic pain assessment tools. Our objectives were to identify measures addressing pain in children with CP, characterize the content of each measure using the ICF, and identify gaps and overlaps.

Materials and methods: Measures were identified from: (1) a systematic review of outcome measures (1998–2012) and (2) a scan of chronic pain measures (2013–2015). Included measures were those published in English, used in children and youth with CP, and contained an item/domain addressing pain. Constructs of the measures were linked to the ICF.

Results: Overall, 31 measures addressing chronic pain in CP were included. Considerable variability was found in the degree to which their content represented the ICF. Most of pain measures address pain intensity and pain location (body functions) as opposed to functional impact of pain (activities and participation).

Conclusions: Functional dimensions are poorly represented in pain measures. Our findings may guide the selection of measures for research and clinical needs for comprehensive chronic pain management in children with CP.

Implications for Rehabilitation

• Chronic pain is prevalent among children with cerebral palsy and significantly interfere with functional activities.

• To effectively manage chronic pain in children with cerebral palsy, measures capturing functional-based information need to be part of routine chronic pain assessment.

Keywords:

• Pain
• measure
• child
• ICF
• cerebral palsy
• ICF core sets
• functioning
• participation

Acknowledgements

We express our thanks to all the developers of measures who kindly shared their measures with us. We would also like to thank Dr. Hal Siden for his valuable comments on early versions of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Verónica Schiariti was the recipient of a NeuroDevNet and Child and Family Research Institute Postdoctoral Fellowship Award (2014–2016) supporting this study.