Chronic Pain Management; the next steps

Thank you to Meredith Smith for this follow up to her 2024 blog.  In it she described the development of a Talking Mats Resource that allowed young people with Cerebral Palsy to monitor and report on their pain.  In this blog Meredith shares what was learnt and the next steps for making the tools freely available.

Why we did this work?

Chronic pain management services are underutilised by children and young people with Cerebral Palsy (CP).  Traditional pain assessment tools are filled out with pen and paper, but this can be difficult for many children with CP, especially if they have communication difficulties. Often an adult fills out the form for them, which means we don’t get a true sense of the young person’s perspective.

We worked with Talking Mats to create two different ways to use two pain assessments; the modified Brief Pain Inventory (mBPI) and the Fear of Pain Questionnaire (FOPQ).  One approach still used pen and paper and the other used Talking Mats .

Figure 1: Fear of Pain Questionnaire – adapted for CP, pen and paper version

Figure 2: FOPQ; Talking Mats version

How we made sure the tools were valid.

We wanted to make sure these tools measured what they were supposed to measure, and that they made sense to the people using them. This is known as ‘content validity’ ⁽¹⁾, and is considered the most important property of any assessment tool. We used a three step process to achieve this, and published three peer-reviewed papers with the findings:

1. We asked people with CP, their families, and clinicians how the tools could be improved, and gathered their feedback suggestions.⁽²⁾
2. We ran an online survey to see which suggestions from step 1 people agreed should be used to improve the tools.⁽³⁾
3. We tested the new tools in one-on-one interviews with children and young people with CP, including those with a range of communication and thinking abilities, to see whether they understood the tools and if the tools were practical to use in real-life settings.⁽⁴⁾

The third step, when we worked directly with kids and young people to test the assessment tools, was the most fun! We found that most children and young people with CP were able to tell us about their pain using the adapted tools. This included those who used AAC (augmentative and alternative communication) and those with mild to moderate cognitive impairment.

The Talking Mats version was generally preferred by younger children (under 8 years), kids with cognitive difficulties, and AAC users. The symbols were easily understood by almost everyone. For most children and young people, it took about 4 minutes to complete the FOPQ and 6 minutes for the mBPI. For people using AAC, it sometimes took longer, up to 20 minutes,as they needed extra time to process questions and answer using their devices.

What we’ve done since

We then ran a larger study across three locations in Australia, using the CP-adapted tools with 128 children and young people as part of their usual care. We wanted to make sure the changes we made didn’t affect how the tools worked statistically (like how well the questions fit together), and to find out how many children and young people with CP could self-report on the impact of pain using the adapted tools.

This paper is currently under review with a journal, but the early results are really encouraging: up to 80% of children and young people with CP were able to give reliable answers about their pain using the adapted tools.

This is a big step forward.  It means more children with CP can tell use directly how pain is affecting them, so we can better support and improve their access to pain management.

Want a copy?

We’re looking forward to making the tools freely available once our final paper is published. In the meantime, if you’re interested in getting a copy, please email Meredith.smith@adelaide.edu.au – we are very happy to share!

Use this link to access the questionnaires.

Please note: Talking Mats Foundation Training is required if you’d like to use the Talking Mats versions.

References:

1. Terwee CB, Prinsen CAC, Chiarotto A, Westerman MJ, Patrick DL, Alonso J, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Quality of Life Research. 2018;27(5):1159-70. https://doi.org/10.1007/s11136-018-1829-0
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. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 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 Rep. 2025:accepted for publication – in press
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

If you would like more information on becoming Talking Mats trained