Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives

Raskoff, Sarah Z; Thurm, Audrey; Miguel, Helga O.; Kim, Scott Y. H.; Quezado, Zenaide M.N.

doi:10.1016/s2352-4642(22)00346-7

Cited by 6 publications

(3 citation statements)

References 60 publications

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“…Most studies have been conducted on patients with severe ID who cannot provide informed consent to participate in pain research [ 59 ]…”

Section: Risk Factors For Pain With Intellectual Disabilitymentioning

confidence: 99%

“…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] migraine, and other chronic headaches [51].…”

Section: Challenges Textmentioning

confidence: 99%

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Pain Management in the Most Vulnerable Intellectual Disability: A Review

2023

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This review is made up of two parts; the first part discussing intellectual disability (ID) in general, while the second part covers the pain associated with intellectual disability and the challenges and practical tips for the management of pain associated with (ID). Intellectual disability is characterized by deficits in general mental abilities, such as reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience. ID is a disorder with no definite cause but has multiple risk factors, including genetic, medical, and acquired. Vulnerable populations such as individuals with intellectual disability may experience more pain than the general population due to additional comorbidities and secondary conditions, or at least the same frequency of pain as in the general population. Pain in patients with ID remains largely unrecognized and untreated due to barriers to verbal and non-verbal communication. It is important to identify patients at risk to promptly prevent or minimize those risk factors. As pain is multifactorial, thus, a multimodal approach using both pharmacotherapy and non-pharmacological management is often the most beneficial. Parents and caregivers should be oriented to this disorder, given adequate training and education, and be actively involved with the treatment program. Significant work to create new pain assessment tools to improve pain practices for individuals with ID has taken place, including neuroimaging and electrophysiological studies. Recent advances in technology-based interventions such as virtual reality and artificial intelligence are rapidly growing to help give patients with ID promising results to develop pain coping skills with effective reduction of pain and anxiety. Therefore, this narrative review highlights the different aspects regarding the current status of the pain associated with intellectual disability, with more emphasis on the recent pieces of evidence for the assessment and management of pain among populations with intellectual disability.

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“…Most studies have been conducted on patients with severe ID who cannot provide informed consent to participate in pain research [ 59 ]…”

Section: Risk Factors For Pain With Intellectual Disabilitymentioning

confidence: 99%

Section: Challenges Textmentioning

confidence: 99%

Pain Management in the Most Vulnerable Intellectual Disability: A Review

2023

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“…Children with severe intellectual disabilities, including those with CP, are more at risk of having pain but are rarely involved in research, causing an inequity in health care and benefit of being involved in research [ 11 ]. It is imperative that we are adaptable in our approaches to ensure equitable access and holistic outcomes for children with developmental disabilities such as CP who may have differing functional, communication, and cognitive abilities [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions

Harvey,

Smith,

Smith

et al. 2024

BMC Med

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Background Cerebral palsy (CP), the most common physical disability of childhood, is often accompanied by a range of comorbidities including pain. Pain is highly prevalent in children and young people with CP, yet has been poorly understood, inaccurately assessed, and inadequately managed in this vulnerable population. This narrative review presents recent research advances for understanding and managing pain in children and young people with CP, focusing on chronic pain, and highlights future research directions. Main body Pain prevalence rates in CP vary due to different methodologies of studies. Recent systematic reviews report up to 85% of children experience pain; higher in older children, females, and those with dyskinesia and greater motor impairment. Research examining the lived experience perspectives of children and their families demonstrate that even those with mild motor impairments have pain, children want to self-report pain where possible to feel heard and believed, and management approaches should be individualized. Notably, many children with cognitive and communication impairments can self-report their pain if adjustments are provided and they are given a chance. Past inadequacies of pain assessment in CP relate to a focus on pain intensity and frequency with little focus on pain interference and coping, a lack of tools appropriate for the CP population, and an assumption that many children with cognitive and/or communication limitations are unable to self-report. Recent systematic reviews have identified the most reliable and valid assessment tools for assessing chronic pain. Many were not developed for people with CP and, in their current form, are not appropriate for the spectrum of physical, communication, and cognitive limitations seen. Recently, consensus and co-design in partnership with people with lived experience and clinicians have identified tools appropriate for use in CP considering the biopsychosocial framework. Modifications to tools are underway to ensure feasibility and applicability for the spectrum of abilities seen. Conclusion Recent research advances have improved our understanding of the prevalence, characteristics and lived experience of chronic pain, and refined assessment methods in children and young people with CP. However, the very limited evidence for effective and novel management of chronic pain in this population is where research should now focus.

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