Tailoring chronic pain assessment for children and young people with cerebral palsy project

The first step in identifying appropriate treatment options for chronic pain is being able to accurately assess the severity and impact of a person’s pain. At the time of this research there were many tools freely available to assess chronic pain in the general paediatric population but few valid, appropriate, and accessible tools for children and young people with disabilities, particularly those with diverse communication, cognitive, and motor abilities. 

Furthermore, many of the available pain assessment tools only assessed the intensity of pain, despite it being well known that pain intensity alone does not provide an adequate picture of the multi-faceted individual pain experience. Other areas of assessment, which are arguably more meaningful to individuals, include how pain interferes with function and how well (or not) a person is able to cope with their pain.   

Novita physiotherapist Meredith Smith, alongside colleagues from across Australia (Adrienne Harvey (Murdoch Children’s Research Institute), Ray Russo (Women’s and Children’s Hospital), Nadine Smith (Perth Children’s Hospital) and Rachel Gibson (University of Adelaide), adapted two existing pain assessment tools to be more appropriate and accessible for children and young people with CP, aged 5-30 years:  

• The Fear of Pain Questionnaire – Adapted for Cerebral Palsy (FOPQ-CP) measures pain-related fear and whether a person avoids certain activities because of pain. 
• The Pain Interference Questionnaire for Cerebral Palsy (PIQ-CP) assesses at how pain interferes with daily activities and function. 

Both tools are accessible to people with diverse cognitive, communication and movement abilities, and are freely available through the Oceania Academy of Cerebral Palsy and other Childhood-Onset Disabilities. 

Up to 80% of individuals with CP in the study, including people with mild-moderate cognitive impairment and people who use alternative and augmentative communication, were able to self-report the individualised impacts of their chronic pain.  This represents a significant improvement compared to previous studies in CP and pain, where less than 46% of participants were able to self-report using existing measures. It is hoped that the new tools will support more equitable service provision as well as inclusion of young people with CP and with diverse communication and cognitive abilities in future pain research. 

Meredith led this project as part of her PhD research, supported by funding from the University of Adelaide’s School of Allied Health Science and Practice. She has since secured additional funding to expand the work. The research aims to better understand the impact of chronic pain on children and young people with cerebral palsy, using the newly adapted assessment tools. It is funded by the Women’s and Children’s Health Network Early Career Spark Grant and is being conducted across sites in Adelaide (Women’s and Children’s Hospital), Perth (Perth Children’s Hospital), and Melbourne (St Vincent’s Hospital).  

Meredith is also part of a national research group led by A/Prof Adrienne Harvey (Murdoch Children’s Research Institute), which recently secured a $1M Medical Research Future Fund grant for the ‘CP-PainEd’ project. This project aims to develop education programs and resources to help children and young people with cerebral palsy and other developmental disabilities manage chronic pain.  Opportunities for Novita clients to contribute to the design and development of the new resources are expected in 2026. 

Links to publications:

1. Smith MG, Gibson RJ, Russo RN, Smith, N, Harvey AR. Structural validity of the Pain Interference Questionnaire and Fear of Pain Questionnaire for children and young people with cerebral palsy. Developmental Medicine and Child Neurology, 2025; https://doi.org/10.1111/dmcn.70033 
2. Smith MG, Gibson RJ, Russo RN, Karanicolas S, Harvey AR. Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification. Qual Life Res. 2024;33(8):2247-59. https://doi.org/10.1007/s11136-024-03693-1 
3. Smith MG, Gibson RJ, Russo RN, Harvey AR. Adapting two pain assessment tools for young people with cerebral palsy: a multi-stakeholder consensus study. Pain Reports. 2025;10(4):e1304. https://doi.org/10.1097/PR9.0000000000001304 
4. Smith MG, Gibson RJ, Schibani M, Russo RN, Thirumanickam A, Harvey AR. The comprehensibility and feasibility of the modified brief pain inventory and fear of pain questionnaire adapted for children and young people with cerebral palsy. Quality of Life Research. 2025. https://doi.org/10.1007/s11136-025-03981-4 
5. Harvey, A., Smith, N., Smith, M. et al. Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions. BMC Med 22, 238 (2024). https://doi.org/10.1186/s12916-024-03458-0