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16 Articles in Volume 19, Issue #2
Analgesics of the Future: Inside the Potential of Glial Cell Modulators
APPs as Leaders in Pain Management
Cases in Urine Drug Monitoring Interpretation: How to Stay in Control
Complex Chronic Pain Disorders
Efficacy of Chiropractic Care for Back Pain: A Clinical Summary
Hydrodissection for the Treatment of Abdominal Pain Caused by Post-Operative Adhesions
Letters: The Word "Catastrophizing;" AIPM Ceases Operations; Patient Questions
Management of Severe Radiculopathy in a Pregnant Patient
Managing Pain in Adults with Intellectual Disabilities
Pain in the Courtroom: An Excerpt
Q&A with Howard L. Fields: How Patients’ Expectations May Control Pain
Special Report: CGRP Monoclonal Antibodies for Chronic Migraine
The Management of Chronic Overlapping Pain Conditions
Vibration for Chronic Pain
What are the dangers of loperamide abuse?
When Patient Education Fails to Improve Outcomes: A Low Back Pain Case

Managing Pain in Adults with Intellectual Disabilities

A lack of verbal cues and an inability to self-report may make it difficult to assess or treat pain in this vulnerable population.
Pages 33-36
Page 1 of 2

Patients with a history of intellectual disability (ID) have been noted to experience pain more frequently and to a higher degree than the general population.1,2 Previously referred to as “mental retardation,” ID occurs in approximately 1% of the population. A diagnosis of ID is generally based upon the presence of an intelligence quotient score below a specific level, along with noted impairments in adaptive functioning.3 Specific forms of intellectual disability include Fragile X syndrome, Down syndrome, Prader-Willi syndrome, phenylketonuria, and fetal alcohol spectrum disorder. Both the understanding and management of ID continue to evolve as these individuals play a more active and inclusive role in society.

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), defines ID as having three necessary criteria:

  1. deficits in intellectual functioning that have been clinically evaluated with IQ testing
  2. deficits in adaptive functioning that significantly hinder the ability of the individual to be independent in the developmental and sociocultural standards
  3. such deficits occurring during childhood.4,5

The DSM-5 does not utilize specific IQ scores for diagnostic purposes and focuses instead on the functioning capabilities of the individual, both of which differ from previous DSM-4 definitions.6 There are classifications on the severity of ID, ranging from mild to profound (most significant). All severities of ID include impairment in social skills and adaptive behavior, while severe and profound classifications include individuals who have limited to no communication ability.7 As such, little continues to be known about the extent, nature, and impact of pain in this group.

The inability to express the subjective experience of pain through traditional communication modalities such as understanding or expressing language or speech may provide a significant challenge for clinicians to adequately identify and treat pain in individuals with ID, especially in more severe forms. This review aims to highlight areas of research into measurable clinical means to assess pain in a non-verbal, non-subjective manner.

Specific Challenges in Patients with Intellectual Disabilities

Inability to Self-Report

The most commonly utilized method to evaluate pain experience is by self-reporting, yet this is not an option for many individuals with either severe or profound ID. Even for individuals with milder forms of ID, the ability to clearly and specifically describe their pain may be limited. Pain has long been recognized to have a negative effect on emotional status, ability to work, social activities, interpersonal relationships, and functional ability, leading to the increased utilization of healthcare services.8

A wide spectrum of factors prevents individuals with ID from receiving quality pain management. Clinical management is made far more difficult when anyone, including those with ID suffering from pain, is unable to communicate the presence, intensity, and aggravating or relieving factors of their pain experience.9 Their inability to report and describe their pain verbally and coherently leaves them improperly treated.10 Despite the fact that studies have documented higher rates of chronic and acute pain in individuals with ID, the prevalence of pain in the ID population is unclear due to communication problems.11,12 As a result, individuals with ID are often dependent on their caregivers’ ability to assess pain through observational skills and clinical experience.13

To ameliorate the disparities surrounding the healthcare of individuals with an intellectual disability, it is important that practitioners work closely and communicate often with the patient (depending on the severity of the disability) and caregiver. Communication may be optimized by maintaining eye contact, speaking slowly, and using tools such as drawings and gestures to provide the information in such a way that the patient can understand. If the individual has severe ID, it is still important to maintain eye contact with the patient in order to build trust and rapport.14 Furthermore, continued patient care with adequate follow-up is key to fully understanding the patient and his or her methods of communication over time. This follow-up may enable practitioners to better interpret any potential pain cues from either the patient and/or the caregiver in order to provide appropriate care.

Sympathetic Nervous System

Interest in non-reported pain measurement within the anesthesiology specialty (ie, monitoring the pain of intubated or sedated patients), is mounting. Although pain continues to be widely considered a subjective experience, pain does have measurable, objective effects upon the body through activation of the sympathetic nervous system.

As reported by Hamunen, et al:15

“Pain stimulates the sympathetic nervous system, which in turn increases heart rate (HR) and causes peripheral vasoconstriction…Theoretically, pain could be detected within an organism based on the effect of activating the sympathetic nervous system in response to pain. By measuring that effect, the pain level may be deduced. For instance…photoplethysmography (pulse oximetry) can be used to assess vasomotor tone (vasoconstriction) and HR and, thus, could potentially be used as a surrogate to assess perioperative pain.”

Simply put, the autonomic nervous system adjusts an organism’s homeostasis in response to environmental and other factors. One branch of the autonomic system, the parasympathetic, may broadly be described as the “rest, digest, and reproduce” activity within the organism. Conversely, the sympathetic nervous system is activated and maintained by internal or environmental conditions that cause the organism to “fight, freeze, or flee.” Each of these branches of the autonomic nervous system has predictable, measurable physiological responses to external stimuli, whether dangerous or nurturing. As the sympathetic nervous system is thought to function to protect an organism, pain as a reflection of the nervous system’s recognition of potential injury, danger, or threat will likely trigger a sympathetic response.

As detailed by Costanza:16

“The sympathetic nervous system is activated with a response known as “fight or flight,” which includes increased arterial pressure, increased blood flow to active muscles, increased metabolic rate, increased blood glucose concentration, and increased mental activity and alertness.”

Last updated on: March 4, 2019
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