Pain Assessment in Adults and Children With Complex Disabilities and Unexplained Behavioral Changes: An Observational Study

ABSTRACT

Pain assessment of people with intellectual disabilities (PWID) represents a complex clinical task that often results in underestimation and inadequate treatment. The Serafico Institute has undertaken research in children and young adults with intellectual disabilities (ID) associated with multiple sensory, physical, and psychobehavioral impairments to improve the ability to detect pain in this vulnerable population. Participants unable to pain self‐report, presenting with unexplained behavioral changes, were assessed with the revised Face, Legs, Activity, Cry, Consolability (R‐FLACC) scale by trained educational and health staff from February to July 2023. Data was compared to retrospective information collected from February to July 2022, before the training of educational and health personnel had been undertaken. Five hundred fifty events of unexplained behavioral changes were evaluated in 87 participants with ID. Among those, 202 were assessed as pain‐related events, 345 were judged as distress events and three events were not clearly identified. The cause of pain was identified in 55% of events. Compared to the retrospective data, we could observe an increase in the detection of pain‐related episodes and a reduction in events that, while not clearly rated, were still treated with analgesics or analgesics plus sedatives. The results of the study highlight that formal training of educational and health personnel, along with the use of a validated tool for pain assessment in PWID can lead to identifying pain‐related events that might otherwise have been overlooked. The fact that the R‐FLACC was found to be very useful for signaling a state of “discomfort,” while not being discriminatory regarding its nature and the cause of pain in this complex population, calls for new studies to identify a tool capable of more accurately discriminating the cause of the pain.