Individualized Numeric Rating Scale to Assess Pain in Critically Ill Children With Neurodevelopmental Disabilities

Background Pain is a significant burden for children with neurodevelopmental disabilities but is difficult for clinicians to identify. No pain assessment tools for children with neurodevelopmental disabilities have been validated for use in pediatric intensive care units. The Individualized Numeric Rating Scale (INRS) is an adapted 0-to-10 rating that includes parents’ input on their child’s pain indicators. Objectives To evaluate the reliability, validity, and feasibility and acceptability of use of the INRS for assessing pain in critically ill children with neurodevelopmental disabilities. Methods This observational study enrolled critically ill patients with neurodevelopmental disabilities aged 3 to 17 years in 2 pediatric intensive care units at a children’s hospital using a prospective repeated-measures cohort design. Structured parent interviews were used to populate each patient’s INRS. Bedside nurses assessed pain using the INRS throughout the study. The research team completed independent INRS ratings using video clips. Participating parents and nurses completed feasibility and acceptability surveys. Psychometric properties of the INRS and survey responses were evaluated with appropriate statistical methods. Results For 481 paired INRS pain ratings in 34 patients, interrater reliability between nurse and research team ratings was moderate (weighted κ = 0.56). Parents said that creating the INRS was easy, made them feel more involved in care, and helped them communicate with nurses. Conclusions The INRS has adequate measurement properties for assessing pain in critically ill children with neurodevelopmental disabilities. It furthers goals of patient- and family-centered care but may have implementation barriers.