Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy

Nadine L Smith; Noula Gibson; Natasha Bear; Ashleigh L Thornton; Christine Imms; Meredith G Smith; Adrienne R Harvey

doi:10.1080/09638288.2024.2362398

Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy

Disabil Rehabil. 2024 Jun 10:1-15. doi: 10.1080/09638288.2024.2362398. Online ahead of print.

Authors

Nadine L Smith^{1

2

3}, Noula Gibson^{1

2}, Natasha Bear⁴, Ashleigh L Thornton^{1

3

5}, Christine Imms^{6

7}, Meredith G Smith^{8

9}, Adrienne R Harvey^{6

7}

Affiliations

¹ Kids Rehab WA, Perth Children's Hospital, Nedlands, WA, Australia.
² Department of Physiotherapy, Perth Children's Hospital, Nedlands, WA, Australia.
³ Division of Paediatrics, Medical School, The University of Western Australia, Crawley, WA, Australia.
⁴ Institute for Health Research, Notre Dame University, Perth, WA, Australia.
⁵ Telethon Kids Institute, Perth, WA, Australia.
⁶ The University of Melbourne, Melbourne, VIC, Australia.
⁷ Murdoch Children's Research Institute, Melbourne, VIC, Australia.
⁸ School of Allied Health Science and Practice, The University of Adelaide, Adelaide, SA, Australia.
⁹ Novita Disability Services, Adelaide, SA, Australia.

PMID: 38856092
DOI: 10.1080/09638288.2024.2362398

Abstract

Purpose: Chronic pain assessment tools exist for children, but may not be valid, reliable, and feasible for populations with functional, cognitive or communication limitations, for example, cerebral palsy (CP). This study aimed to (i) identify chronic pain assessment tools used with children and young people and rate their measurement properties; (ii) develop a CP specific feasibility rating tool to assess the feasibility of tools in CP; and (iii) categorise tools according to reporting method.

Materials and methods: Assessment tools were identified by literature review. Their measurement properties were rated using the COnsensus based standards for the Selection of health Measurement INstruments. The CP specific Feasibility Rating Tool was developed and used to rate the tools.

Results: Fifty-seven chronic pain assessment tools were identified. Six have content validity for CP, four of these use proxy-report. Forty-two tools were considered feasible for people with CP; 24 self report and 18 observational/proxy-report. Only the Paediatric Pain Profile has content validity and feasibility for people with CP unable to self-report.

Conclusions: There are few valid, reliable and feasible tools to assess chronic pain in CP. Further research is required to modify tools to enable people with cognitive limitations and/or complex communication to self-report pain.

Keywords: Feasibility; assessment tools; cerebral palsy; chronic pain.

Plain language summary

Few of the existing chronic pain assessment tools are feasible or valid to use with all young people with cerebral palsy (CP).Modifications to self-report tools are needed to improve access for young people who have cognitive impairment or use alternative and augmentative communication.The pain assessment tool with the strongest feasibility and measurement properties for young people who cannot self-report is the Paediatric Pain Profile.Clinicians will need to consider a range of chronic pain assessment tools to assess the biopsychosocial domains important to young people with cerebral palsy.

Publication types

Review