Fear of Pain Questionnaire – Adapted for Cerebral Palsy and the Pain Interference Questionnaire for Cerebral Palsy
What are the FOPQ-CP and PIQ-CP?
The Fear of Pain Questionnaire – Adapted for Cerebral Palsy (FOPQ-CP) and the Pain Interference Questionnaire for Cerebral Palsy (PIQ-CP) are tools designed to measure the impact of chronic pain on children and young people with cerebral palsy, aged 5 to 30 years.
The FOPQ-CP measures pain-related fear and whether a person avoids certain activities because of pain. The PIQ-CP assesses at how pain interferes with daily activities and function.
The FOPQ-CP was adapted from the Fear of Pain Questionnaire for Children- Short Form [1], developed by Dr Laura Simons. The PIQ-CP was adapted from a modified version of the Brief Pain Inventory[2] for parents of children with cerebral palsy, led by Dr. Chantel Barney. Permission was given by the original authors to modify these tools.
How were the FOPQ-CP and PIQ-CP developed?
The FOPQ-CP and PIQ-CP were adapted by a team of clinicians and researchers in Australia, with help from children and young people with cerebral palsy, as well as their parents and carers. The development process included focus groups and interviews[3], a consensus survey[4], and pilot testing[5]. The tools were designed to be inclusive of people with different cognitive and communication abilities.
The PIQ-CP (Pain Interference Questionnaire for Cerebral Palsy) was previously referred to as the modified Brief Pain Inventory adapted for Cerebral Palsy in earlier work5; however, PIQ-CP is now the official name of the tool.
In partnership with TalkingMats Ltd, the tools have also been made available in TalkingMats® versions, which are especially useful for those who need extra support in communication.
Using the FOPQ-CP and PIQ-CP
To learn how to use the tools, refer to the administration guide. You can download the standard questionnaire versions for free and use them in both research and clinical settings.
If you would like to use the TalkingMats® versions, it is strongly recommended to complete the TalkingMats Foundation training. For those who would like to access the TalkingMats versions, please email Meredith.smith@adelaide.edu.au.
Decision tree for selecting chronic pain assessment tools for people with cerebral palsy
Below are two decision trees to help guide assessment of chronic pain for people with CP. Perth Children’s Hospital recommend you start at Decision Tree 1 if you are unclear as to whether the young person has chronic pain. The decision trees help you to identify if a person with CP has chronic pain (if you are unsure) and to select the most appropriate chronic pain assessment to use for people with CP, based on their ability to self-report or need for proxy or observational assessment. Once you are guided through the process you will come to a selection of recommended tools to assess chronic pain in CP. You can then choose a tool for the domain of interest. The recommended tools have undergone examination to ensure they are valid and reliable and can be used for the varying functional abilities of people with CP. People with the lived experience of CP (caregivers of young people with CP and young people with CP) and clinicians worked together to reach consensus on the tools that are the most meaningful and helpful to include in this decision tree.
Chronic pain assessment for people with cerebral palsy Decision Trees
References:
- Heathcote, L. C., Bhandari, R. P., Timmers, I., Harrison, L. E., & Simons, L. E. (2020). Rapid identification and clinical indices of fear-avoidance in youth with chronic pain. Pain,161(3), 565-573. https://doi.org/10.1097/PR9.0000000000000666
- Barney CC, Stibb SM, Merbler AM, Summers RLS, Deshpande S, Krach LE, et al. Psychometric properties of the brief pain inventory modified for proxy report of pain interference in children with cerebral palsy with and without cognitive impairment. Pain Reports. 2018;3(4):e666. https://doi.org/10.1097/pr9.0000000000000666
- 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
- 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
- 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
Acknowledgements:
The symbols used in the questionnaires are designed and © to Adam Murphy 2015 and assigned to Talking Mats Ltd. In perpetuity. They have been used with permission. TalkingMats® was developed at the University of Stirling and the intellectual property rights in TalkingMats are owned by the University of Stirling and utilised by Talking Mats Limited under exclusive licence. Training in TalkingMats must be delivered by an accredited trainer who holds a current licence with TalkingMats Ltd.
Authors:
Meredith Smith, Rachel Gibson, Ray Russo, Adrienne Harvey