639: Why is a Cerebral Palsy specific Core Outcome Set needed for chronic pain?

Topic: Education, Societal Impact, and Others
Subtopic: Organisation of clinical pain care

Background and Aims: Cerebral palsy is the most common childhood onset physical disability. Three quarters of children and young people with cerebral palsy experience chronic pain, however biopsychosocial assessment has not been part of routine care. Previously developed outcome sets are limited due to due to lack of observational measures, omission of tools that assess impact on emotional functioning, and lack of development with people with lived experience.
This study aimed to develop a Core Outcome Set (COS) of valid, reliable and feasible tools that assess chronic pain interference and impact on emotional functioning specifically for children and young people with cerebral palsy.

Methods: Measurement properties and feasibility of existing chronic pain assessment tools were evaluated for children and young people with diverse abilities using the COnsensus based standards for the Selection of health Measurement INstruments and a cerebral palsy-specific feasibility rating tool. People with lived experience of cerebral palsy (n=36) and clinicians (n=47) participated in consensus processes to determine which tools to include, guided by the Core Outcome Measures in Effectiveness Trials guidelines. The final set of tools was compared with existing sets, including PedIMMPACT, the Holland Bloorview Toolbox and the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements.

Results: The cerebral palsy-specific COS includes 20 tools: six assess the impact of pain on emotional functioning, ten assess chronic pain interference in daily life and four are observational tools for children and young people who are unable to self-report. This new COS improves on existing sets: PedIMMPACT does not include observational tools, and the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements does not include tools that assess the impact of chronic pain on emotional functioning. Several tools within other COS are not feasible for those with diverse mobility, communication and cognitive abilities.

Conclusions: The new cerebral palsy-specific COS facilitates equity of pain assessment through the inclusion of observational and proxy report assessment tools for those unable to self-report and is the first to integrate assessment of the impact of pain on emotional functioning as well as pain interference in daily life for children and young people with cerebral palsy.
The COS guides clinicians to ensure feasible and meaningful assessment, to tailor interventions to individuals and can be used in research to accurately assess chronic pain interventions for children and young people with cerebral palsy.

References: 1. Palermo TM, Li R, Birnie KA, Crombez G, Eccleston C, Kashikar-Zuck S, et al. Updated recommendations on measures for clinical trials in pediatric chronic pain: a multiphase approach from the Core Outcomes in Pediatric Persistent Pain (Core-OPPP) Workgroup. Pain. 2024;165(5):1086-100.
2. Schiariti V, Shierk A, Stashinko EE, Sukal‐Moulton T, Feldman RS, Aman C, et al. Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project. Developmental Medicine & Child Neurology. 2024;66(5):610-22.
3. Kingsnorth S, Orava T, Provvidenza C, Adler E, Ami N, Gresley-Jones T, et al. Chronic pain assessment tools for cerebral palsy: a systematic review. Pediatrics. 2015;136(4):e947-e60.
4. Smith NL, Gibson N, Bear N, Thornton AL, Imms C, Smith MG, et al. Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy. Disability and Rehabilitation. 2024:1-15.

Presenting Author: Nadine Smith
Submitting Author: Nadine Smith

Senior Author: A/Prof Adrienne Harvey

IASP 2026 Global Year theme of Neuropathic Pain: No

• Dr Noula Gibson: PhD - Perth Children's Hospital
• Dr Ashleigh Thornton: PhD - Kids Rehab Perth Children's Hospital
• Professor Christine Imms: PhD - The University of Melbourne, Victoria, Australia
• A/Prof Adrienne Harvey: PhD - Murdoch Children's Research Institute, Parkville Victoria, Australia