Challenges in pain assessment and management among individuals with intellectual and developmental disabilities

Abstract

Introduction: Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life. Objectives: This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD. Methods: This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice. Results: The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report. Conclusion: Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.

Specific Behavioral Responses Rather Than Autonomic Responses Can Indicate and Quantify Acute Pain among Individuals with Intellectual and Developmental Disabilities

“…Furthermore, the prevalence of chronic pain among individuals with IDD, reaching up to 70%, is high by any standard [ 13 , 15 , 16 ]. Identifying and quantifying pain states among individuals with IDD in a manner that does not necessitate self-reporting is thus crucial in order to provide them with adequate pain management; however, it is also particularly challenging (for a review, see reference [ 17 ]).…”

Paediatricians’ Views on Pain in Children with Profound Intellectual and Multiple Disabilities

“…Despite longstanding beliefs about pain insensitivity or indifference in persons with intellectual disabilities [ 21 , 22 ], none of the respondents believed that children with PIMD experienced pain less than typically developing children. Our findings are in line with those of Valkenburg et al [ 15 ], who found that around 60% of anaesthetists considered children with intellectual disabilities equally sensitive and 30% considered them more sensitive to pain than typically developing children.…”

“…Up to three-quarters estimated that they were not sufficiently trained to confidently care for these children, most of their knowledge being acquired informally through on-the-job training and through mentorship. If children with PIMD have strongly limited communication capabilities, with a restricted, if not absent, ability to self-report pain, physicians should always explore limited self-reporting as a possible means of collecting pain information [ 21 ]. Pain may also prove difficult to distinguish from other conditions, such as distress, anger, sadness or anxiety, even for familiar caregivers, with an overlap in expressed behaviours [ 38 ].…”

“…Multiple studies have shown that opioids are effective and safe in children when they are appropriately introduced and titrated appropriately [ 41 ]. However, children with PIMD may prove more challenging due to associated risk factors, such as poor airway control or hypoventilation [ 21 ]. This concern was significantly higher among community-based paediatricians.…”

Challenges and ways for pain assessment of children in the primary health care

“…Besides, special education for caregivers should be offered for better assessment of the pain and delivering the information of the relevant physicians for accurate diagnosis and better management. 32 In addition to the many challenges in assessment, there are also various challenges and difficulties in the management and research regarding pain during childhood. Many concerns regarding this field investigation as the potential presence of biased information, the presence of inadequate sample size, and proper study designs, in addition to exploring the potential mechanisms for proper identification and diagnosis of the pain and eliminating its origin.…”