Pain and symptom management in neurodevelopmental disorders: Sensory and nociceptive function/pain and symptom management

Pain is a common and challenging experience for individuals with intellectual and developmental disabilities (IDD) and their caregivers. Measuring pain in the clinical or research context is constrained by limitations in cognitive, motor, and communication abilities. This chapter reviews the nature of pain in IDD and research and practice related to sensory function, observational proxy-report approaches to assessment, treatment and the use of experimental biomarkers. From a clinical standpoint, assessment tools specific to IDD are available, yet there is little evidence that these assessments have been widely adopted into clinical practice. This may be due, in part, to the heterogeneity of cognitive and communicative function often makes assessment subjective and ambiguous, leading to wide variations to pain detection and management. Even with advanced biological and imaging approaches to pain in children with IDD, our ability to manage pain among individuals (children/youth?) with intellectual disabilities remains a significant challenge. Based on current findings suggestions are made for coordinated pain management that include evidence-based approaches and communication across the individual, the family, and health-care professionals. Knowledge translation initiatives to improve pain assessment practices in health care as well an initiative to educate secondary caregivers on pain in IDD are presented. The chapter concludes with a description of ongoing challenges and hopes for the future in the field of pain in IDD.