Access to the PPM Journal and newsletters is FREE for clinicians.
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 (Part 1)
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

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.”

Specifically, activation of the sympathetic nervous system includes:16

“Increased HR, bronchiole dilation, reduced activity of GI/GU systems with tightening of associated sphincters, pupil dilation, renin secretion by the kidney, gluconeogenesis by liver, increased perspiration and lipolysis.”

By understanding the sympathetic system, practitioners, caregivers, and those involved with the care of an individual with an intellectual disability may be better able to provide effective pain management. Such care may include sympathetic nerve blocks, osteopathic manipulative medicine, and complementary and alternative medicine approaches. The type of treatment is dependent on the severity of the pain perceived by the individual with ID, as well as his or her treatment tolerance.

Pain Response

Pain may be viewed as both a personal and private experience, as one cannot truly understand what the individual with pain is feeling.17 This lack of information may make treatment complex, especially for individuals with ID who may or may not be able to report, yet alone describe, their pain. Therefore, palpatory skills may be utilized in various disciplines, such as osteopathic manipulative medicine, to better understand and treat both acute and chronic pain. Regardless of the type of treatment, the pathophysiology of pain response should be explored to provide effective and safe treatment options for patients with an intellectual disability.

From a wider biologic perspective, pain is indicative of a threatening, potentially fatal environmental stimulus that would trigger activation of the sympathetic nervous system. The effects of sympathetic activation such as pupil dilation and gluconeogenesis are thought to aid in the organism’s survival; to aid its ability to flee, fight, or freeze. Conversely, an organism’s parasympathetic response is triggered in response to nurturing, nutritive environmental conditions to aid survival through restorative metabolic functions, and reproduction. Therefore, it is expected that an organism will have measurable changes in homeostasis in response to external stimuli.

The chronicity of pain appears to alter autonomic nervous system function in a manner that complicates a direct correlation in objective measures between sympathetic response and pain. For instance, acute pain might lead to an increase in blood pressure, whereas chronic long-term pain may actually reduce blood pressure. As noted in a recent study, “Chronic stress responses can be expressed by decreased…sympathetic hyperreactivity to a stressful stimulus.”18 In other words, the sympathetic response to chronic pain may be different than acute pain, perhaps even typified by a blunted response in measurable physiologic effect while paradoxically increasing the subjective perception of pain.

This apparent effect of chronic pain upon the autonomic system has been noted:19

“The sympathetic nervous system is affected in CLBP (chronic low back pain) and FBSS (failed back surgery syndrome) patients with abnormalities in SSR (sympathetic skin response) and the dysfunction of sympathetic nervous system may contribute to the intensity and chronicity of pain in these groups of patients.”

While the activation of the sympathetic response to acute pain as an aid to survival appears straightforward, that chronic pain might reduce the effect of the sympathetic nervous system, increase the subjective experience of pain, and thereby theoretically reduce the organism’s ability to survive seems somewhat paradoxical. In any event, clinicians would be wise to note that this effect may be present in patients with ID who suffer from chronic pain. Practitioners of osteopathic manipulative medicine have clinically noted that the physiologic changes related to sympathetic activity or other systems resulting from pain could be identified through palpation.

Changes in skin temperature or moisture may often be readily sensed by palpation and are often considered a component of a wider homeostatic response categorized as tissue texture changes. “Tissue changes that occur in response to the effects of sympathetic innervation may be manifested by an increase or decrease in skin temperature or moisture.”20 Therefore, clinical utilization of palpation of the skin could “allow the physician to evaluate for changes in skin turgor and tension…[which] reflect a change in local sympathetic nervous system activity.”21 Simply put, clinicians could potentially utilize palpatory findings in conjunction with objective data such as vital signs to assess and monitor pain in patients with intellectual disability.


While significant efforts are underway to continue the development of objective, quantifiable means to determine a non-communicative way to measure a patient’s level of pain, especially within critical care, anesthesiology, and pain management specialties, clinicians of all types should be aware of non-verbal, objective clinical information that may help to guide care. As reviewed above, both objective signs and subjective palpable physiologic changes may be related to activation of the sympathetic nervous system by pain. A patient’s subjective experience of pain, especially acute pain, may be extrapolated by such information as pulse oximetry, blood pressure, heart rate, and skin conductance.

However, this experience may not be as simple as chronic pain having a more paradoxical effect upon the autonomic response to pain, for instance in the case of blunting changes in vital signs that would be commonly encountered with acute pain. As the technologic means to objectively detect and measure pain continue to improve, clinicians may be able to aid patients with intellectual and other communication disabilities through the use of palpatory skills developed in such disciplines as osteopathic manipulative medicine. The ability to manually detect changes in an ID patient’s autonomic nervous system activity may be a valuable tool for clinicians in managing pain.

Last updated on: April 12, 2019
Continue Reading:
Polarizing Topics in Chronic Pain
close X