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The International Association for the Study of Pain

Towards equitable pain assessment: Evidence and knowledge gaps in comprehensive pain assessment in youth with neurodevelopmental disabilities

Symposia

Abstract Description

Youth with neurodevelopmental disabilities (NDDs; e.g., cerebral palsy, intellectual disability, autism) are more likely to experience acute and chronic pain than their peers without NDDs; however, their pain experiences are more likely to be overlooked and/or misinterpreted. Ample measures exist for pain assessment, yet their utility and frequency of use in youth with NDDs is unclear, and available measures do not have strong psychometrics for all diagnostic groups. This presentation will share findings from a recent systematic review that: i) summarized all 707 peer-reviewed articles reporting any self- and/or observer-reported measure of pain intensity in youth (3-24 years old) with NDD; and ii) identified self- and/or observer-reported measures of other pain-related outcomes in a subset of 137 articles with a primary focus on pain (i.e., pain interference, emotional functioning, physical functioning, quality of life, adaptive functioning, sleep, peer/family relationships, communication). Overall, the largest proportion of studies examined youth with cerebral palsy, chronic pain using observer-report, and in medical (vs community) settings. Less than 5% of studies assessed any pain-related outcome beyond pain intensity identifying a critical inequity in the recommended comprehensive assessment of pain experience in youth with NDD as compared to their peers without NDD. 

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