Pain Measurement in Infants and Children With and at Risk for Intellectual Disabilities

Abstract

Standards of patient care require that comprehensive pain assessments be conducted at routine intervals. Infants and children with and at risk for intellectual disabilities, who are at high risk for experiencing pain, receive significantly less representation in the literature to inform pain measurement practice. The objectives of this review include (1) review and discuss the current literature surrounding pain measurement in infants and children with and at risk for intellectual disabilities, (2) define pain assessment tools, scales, and measures that are being used in infants and children with and at risk for intellectual disabilities, (3) discuss the strengths and limitations of the pain assessment tools, scales, and measures, (4) make recommendations for future pain research focused on this population. A narrative review of the literature regarding pain measures in infants and children with and at risk for intellectual disabilities was conducted using PubMed. A search strategy was created in consultation with a librarian scientist. There were no date limiters applied to the search. Pain measures can be classified as self‐report, behavioral (e.g., cry, facial expressions), physiological (e.g., heart rate, biomarkers, oxygen saturation, respiratory rate), and neurophysiological (electroencephalogram, functional magnetic resonance imaging, near infrared spectroscopy). There is a considerable dearth in the literature surrounding pain measures and pain indicators in this population, along with small sample sizes and inconsistent findings reported across studies. Future research is needed to compare pain responses across different age groups and intellectual disability diagnoses to neurotypical peers.