Researchers from the University of Adelaide have taken existing questionnaires used to measure chronic pain and made them accessible for children and young people with cerebral palsy.
Leading the work to create the Fear of Pain Questionnaire - Adapted for Cerebral Palsy and the Pain Interference Questionnaire for Cere bral Palsy was Dr Meredith Smith, from University's School of Allied Health Science and Practice.
Cerebral palsy is the most common child-onset physical disability, and is used as an umbrella term to describe a group of disorders of movement and posture. Pain is one of the most common comorbidities for people with cerebral palsy.
"Up to 75 per cent of children and young people with cerebral palsy report ongoing pain, which is much higher than those without cerebral palsy," says Dr Smith, who is also a clinical paediatric physiotherapist.
"Assessing how pain impacts areas of daily life, including how pain impacts emotional functioning, is of particular importance due to known links between emotional functioning and long-term pain outcomes.
"Reliable assessment of how pain impacts different areas of life may also help to identify those who would benefit from best-practice chronic pain treatments, which are currently underutilised by people with disability."
Dr Smith said although there are other questionnaires available, many are not suitable for children and young people who have different communication, cognitive and movement abilities.
"Pain is such a subjective experience - it is really important to understand how pain impacts a person from their own perspective," she said.
"For people who have different communication, thinking and movement abilities, we have previously relied on proxy-report. But we know that proxy-report measures are often inaccurate - both under-estimating and over-estimating pain.
"People with cerebral palsy have also told us that some areas are too personal to be assessed by a proxy report - for example, pain-related fear."
The pain questionnaires are already being used by clinicians in South Australia, Victoria and Western Australia.
"The feedback from clinicians is that they are able to more accurately identify the impact of pain for children and young people with disability, even more broadly than just cerebral palsy," says Dr Smith.
"We found that 80 per cent of children and young people with cerebral palsy could provide self-reported pain information when using these questionnaires.
"This is a substantial increase on previous studies in cerebral palsy and pain, where approximately 40 per cent of people with cerebral palsy could provide self-report (using the questionnaires previously available), before these were developed."
Amy Hogan and Georgina Henry both live with cerebral palsy and welcomed the creation of the adapted pain tools.
"I know pain in this context (living with cerebral palsy) can be really difficult to describe," says Amy.
"Adapted pain tools give precise language to what can sometimes feel unexplainable, helping health professionals better understand and respond to what we're actually experiencing."
Georgina said the adapted tools help give a voice to children who previously hadn't been able to easily share how they're feeling.
"Living with chronic pain is exhausting and at times isolating - but it remains invisible to most people," Georgina said.
"These adapted tools are the first step to finding a path towards improving pain management, particularly for children with communication difficulties, who are often left behind."
Dr Smith said the adapted questionnaires also have potential for use with wider groups of children and young adults with other developmental disabilities, such as intellectual disability.
"We developed different ways of administering the assessments to make them more accessible," she said.
"This involved working with a team in the UK to develop TalkingMats versions of the tools.
"TalkingMats is a visual communication framework designed to improve communication for people with and without communication disability. "
The questionnaires are free to use and can be downloaded from the Australasian Academy of Cerebral Palsy and Developmental Medicine.
