Establishing consensus for the assessment of chronic pain in children and young people with cerebral palsy: a Delphi study

Abstract

Purpose

Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP.

Method

A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either “core”, “recommended”, “exploratory” or “not required”.

Results

After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression.

Conclusion

These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.

Implications for rehabilitation

• Chronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.

• The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.

• Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.

Keywords:

• Cerebral palsy
• pain
• assessment
• consensus
• Delphi

Acknowledgements

The authors would like to acknowledge the support of the members of the Australian Pain in Cerebral Palsy Research Group and the contribution of the clinicians, researchers and persons with lived experience of cerebral palsy who participated in the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This project was partly funded by a seeding grant from Clinical Sciences of the Murdoch Children’s Research Institute. The authors declare that they have no conflicts of interest.