Despite the high prevalence of chronic pain in young people with cerebral palsy (CP), assessment using a biopsychosocial model is not routine clinical practice. There are many existing chronic pain assessment tools available, however there is no consensus about which tools are relevant and feasible for young people with CP.
This study aimed to improve the identification and assessment of chronic pain for young people with CP by determining a core outcome set of chronic pain assessment tools mapped to CP specific biopsychosocial domains for use in routine care.
Methods: Existing chronic pain assessments were identified from a structured literature review. Feasible, reliable and valid assessments were reviewed and discussed in workshops comprising people with lived experience, clinicians and researchers to refine a list of assessments to take to an e-Delphi study. A purposeful sampling strategy followed by snowball sampling was used to identify people with lived experience and clinicians to invite to participate in the e-Delphi. The survey asked participants to rate the tools as ‘very useful’ (in current state or if modified), ‘useful’ (in current state or if modified), ‘not very useful’ (even if modified) or ‘I would not use it’ (unmodifiable). The consensus criteria were set at 75% agreement for very useful or useful, either in current state or if modified.
Results: The review identified 75 chronic pain assessment tools. Forty-three feasible, reliable and valid tools were presented in two workshops with 19 key stakeholders (6 people with lived experience of CP and 12 clinicians or researchers) resulting in a refined list of 27 assessment for the e-Delphi. In round 1 of the e-Delphi survey, 143 participants were invited to rate the 27 assessments, with 110 (77%) people participating: 42 people with lived experience and 68 clinicians/clinician researchers. Nineteen assessments reached 75% agreement for inclusion in a core set. Eighty-five (77%) of participants (33 people with lived experience, 52 clinicians/clinician researchers) completed round two of the e-Delphi survey which re-presented nine tools. None of the assessments re-presented reached 75% agreement to be included in the chronic pain assessment core outcome set, resulting in a final set of 19 assessments. Included assessments were four observational assessments for young people who cannot self -report, six assessments of the impact of chronic pain on emotional wellbeing, and nine assessments of the impact on physical abilities and participation. Nine of the 19 included assessments also have at least one item on the impact of pain on sleep.
Conclusion: Consensus with key stakeholders identified 19 chronic pain assessments that can be used to assess the impact of chronic pain on the lives of young people with CP.
Noula Gibson: Kids Rehab WA, Perth Children’s Hospital, Nedlands, WA, Australia; Department of Physiotherapy, Perth Children’s Hospital, Nedlands; WA, Australia
Natasha Bear: Institute for Health Research, Notre Dame University, Perth, WA, Australia
Ashleigh L Thornton: Kids Rehab WA, Perth Children’s Hospital, Nedlands, WA, Australia, Division of Paediatrics, Medical School, The University of Western Australia, Crawley, WA, Australia, Telethon Kids Institute, Perth WA, Australia.
Christine Imms: The University of Melbourne, VIC, Australia; Murdoch Children’s Research Institute, Melbourne, VIC, Australia.
Adrienne R Harvey: The University of Melbourne, VIC, Australia; Murdoch Children’s Research Institute, Melbourne, VIC, Australia
Disease Category: Anaesthesia & pain control, Developmental, psychosocial, & learning problems
Disease Name: Cerebral palsy, Chronic pain
Age Range: 5 - 25
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Researchers
- Service providers
- Recommendations for outcome measures (measurement/how)
- Delphi process
- Literature review
- Semi structured discussion
Existing chronic pain assessments were identified from a structured literature review. Feasible, reliable and valid assessments were reviewed and discussed in workshops comprising people with lived experience, clinicians and researchers to refine a list of assessments to take to an e-Delphi study. A purposeful sampling strategy followed by snowball sampling was used to identify people with lived experience and clinicians to invite to participate in the e-Delphi. The survey asked participants to rate the tools as ‘very useful’ (in current state or if modified), ‘useful’ (in current state or if modified), ‘not very useful’ (even if modified) or ‘I would not use it’ (unmodifiable). The consensus criteria were set at 75% agreement for very useful or useful, either in current state or if modified.