Table 1.

Challenges in the assessment and management of pain with ID

Challenges	Text
Difficulty in discriminating between pain and other symptoms	Behavioral expressions are inherently consistent across populations and determined by long-established biological dispositions [48] It is difficult to differentiate pain from other conditions such as anxiety, depression, or other emotions due to the overlap of manifestations [49] The signs and symptoms of pain may be mistakenly attributed to the intellectual disability [48, 49] The effects of situational factors such as the immediate surroundings, caregiver behavior, and culture on pain expression in individuals with ID are not well understood [50] Individuals with ID may exhibit typical pain behaviors (e.g., self-injury, moaning, or facial expressions) making it difficult to discriminate between signs of pain from other signs [35, 37]
Challenges in the pain assessments	Pain in individuals with ID is not easy to identify, as is the cause or the source of pain [51] Incorrect beliefs regarding pain insensitivity or indifference lead to underestimation as well as under-treatment of pain [25] Self-reporting scores may not be possible and may be unreliable because of the impaired ability to communicate [35] The underlying neurologic condition and associated functional limitations may confuse the presentation of pain [52, 53] Observers are likely to underestimate patients’ suffering [54, 55]
Challenges in pain management	Individuals with ID are at risk of developing drug-related side effects due to immature nervous systems, functional impairments, and the concurrent use of multiple medications [25] Fear of the risk of respiratory depression linked to opioids is common among prescribers [12] Individuals with ID are given fewer analgesics compared with their cognitively intact populations [56] Many people with an ID are dependent on their caregivers for ongoing management of their healthcare needs [35, 37] Pain medications may mask the sources of pain, and the medications could delay the correct diagnosis of pain [36, 57]
Lack of education	Observers may be subject to old and wrong beliefs about individuals with ID and their decreased capacity to experience pain [25, 53] The skills and the level of education of the nurse and family are important in managing pain in this group [58]. Kankkunen et al. [51] identified that only 8% of the nurses working with individuals with ID had undertaken education for pain management The observers may not blind to the application of the painful stimulus and may overestimate the pain sensation [25] Intrapersonal and interpersonal factors as well as social/cultural factors may influence the caregiver’s ability to provide accurate pain ratings [25]
Lack of evidence-based research studies	Research studies in populations with ID are challenging due to ethical complexity [25] Self-reported methods for pain assessments are not suitable for individuals who are difficult to communicate with [25] The caregiver/parent-reported pain scores are not valid or cannot adequately power studies due to small sample sizes [25] Most studies have been conducted on patients with severe ID who cannot provide informed consent to participate in pain research [59] The evidence on effective pain management practices for individuals with intellectual disability is limited [60] There is an absence of clinical guidelines about the safe and efficient different modalities in the treatment of patients with ID [61, 62]