Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties.
Nadine L Smith, Meredith G Smith, Noula Gibson and 3 others
PMID 36111806WHAT IT FOUND
No pain coping questionnaire is fully validated for children with neurodevelopmental disabilities.
The CP QoL may flag pain issues, but clinicians should not rely on it alone. Use the FOPQ or BAPQ with caution, knowing they lack validation for this specific population.
Key findings
01The CP QoL is the only tool with content validity for individuals with a neurodevelopmental disability, but it is not recommended as a stand-alone pain coping assessment.
02The FOPQ and BAPQ have content validity for adolescents with chronic pain and are provisionally recommended, though they require further validation for neurodevelopmental disabilities.
03None of the seven identified tools had high overall quality evidence for any measurement property, and all require further psychometric evaluation.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review only included tools that had already been used in this specific population, potentially missing other useful instruments. Most evidence comes from studies on cerebral palsy, so findings may not generalize to other neurodevelopmental disabilities like autism or intellectual disability. Many tools were developed before current COSMIN guidelines, leading to downgraded ratings due to missing data rather than proven poor quality. There is no evidence on the responsiveness of any tool to change in pain coping, so they cannot be used to track treatment progress with confidence. Measurement invariance was not reported for any tool, meaning we do not know if these questionnaires measure the same construct in neurodevelopmental disabilities as they do in typically developing peers.
Declared interests
No conflicts of interest were reported in the provided text.
The easy way to misread this
Do not assume that a score on the FOPQ or BAPQ is a valid measure of pain coping in a child with an intellectual disability. These tools have content validity for chronic pain generally, but not specifically for neurodevelopmental disabilities, and no tool is fully validated for this population.