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Understanding pain in patients with intellectual disabilities


“How would you rate your pain today?” the nurse asks Michael, age 21. Along with autism spectrum disorder (a pervasive developmental disorder), he has intellectual and other disabilities. Michael has been diagnosed with a cancerous tumor about 6 cm in size, which occupies most of his nasopharyngeal cavity. He looks at the pain scale chart and answers in a soft voice without changing expression, “It’s a 10.”

Like many patients with intellectual disabilities (IDs), Michael rarely demonstrates pain through crying or facial contortions. Would you know how to evaluate his response and intervene appropriately?

If you’re an experienced nurse, you might “know” your patient is in pain even if he or she can’t communicate verbally. But for Michael and others like him, pain may manifest atypically. Chances are your experiences haven’t prepared you to identify pain in ID patients with limited ability to communicate or understand. As a result, you might not know the patient’s in pain. Typical indicators, such as crying, grimacing, elevated blood pressure, or tachycardia, may be absent due to central nervous system (CNS) damage accompanying the ID. Although the heart rate or blood pressure may rise in some ID patients, these aren’t always reliable pain indicators in those with severe ID. What’s more, a fast pulse or high blood pressure also may stem from infection or stress. In addition, some patients with IDs exhibit self-injurious behaviors, which some professionals may mistakenly interpret as insensitivity to pain. In fact, these inappropriate behaviors may be a response to pain.

Early assessment and appropriate intervention for pain can enhance the quality of life for those with IDs. Unfortunately, these patients are less likely to see healthcare practitioners regularly or have their pain recognized and treated promptly, especially if they’re nonverbal. They’re also more likely to suffer chronic medical conditions and subsequent illnesses related to some facet of their disability. For instance, those with cerebral palsy are likely to have multiple musculoskeletal impairments, which may require range-of-motion and stretching exercises—leading, in turn, to significant pain. In persons with limited ability to move on their own, injections, infections, and other conditions may cause discomfort. Even worse, these patients are at increased risk for injuries, such as compromised skin integrity, due to incontinence or infrequent position changes.

Don’t rely on verbal expression of pain

Keep in mind that changes in the neural network may limit the patient’s understanding and verbal communication. With ID, the ability to think abstractly doesn’t relate consistently to the intelligence quotient. In patients with severe ID, pain assessment may be markedly imprecise. Even when the patient can express pain verbally, you can’t rely solely on verbal expression. Yet beware of mistaking poor verbal communication for absence of severe pain, because this could delay detection of a serious or critical condition.

Assessing pain

In healthcare settings, pain assessment begins with the nurse. But for a complete assessment of patients with IDs, your own observations may not be adequate. You should also obtain baseline information from family members and others who know the patient best, as well as from persons in close contact—paraprofessionals, therapists, group-home parents, coaches, and other relatives. Their instincts and observations are critical in identifying and evaluating potential pain signs and symptoms. (For information on pain evaluation tools, see the box below.)

Pain evaluation tools

Use of pain evaluation tools in adults with ID isn’t well established. Some revisions and adaptations of pain tools are promising, but these versions haven’t been used frequently enough to establish their validity. Many pain scales have proved impractical for routine use because of lengthy administration time, complexity, or lack of applicability for different ages or degrees of ID.

The FLACC (Face, Legs, Activity, Crying, and Consolability) scale and the Individualized Numeric Rating Scale (INRS) have been used with some consistency and validity in children with cognitive disabilities. A current revision of the Noncommunicating Children’s Pain Checklist–Revised also has been used in children; a further revision, the Chronic Pain Scale for Nonverbal Adults with Intellectual Disabilities (CPS-NAID), shows promise for use with adults. Currently, though, no specific objective pain scale is used consistently with this population.

Start by evaluating the patient’s baseline behaviors without concentrating on disabilities. What changes, if any, have occurred recently in the patient’s abilities or baseline functioning? Did these changes come on gradually or suddenly? How does the patient usually demonstrate or react to pain? What abilities does he or she have to convey pain? To get a more comprehensive picture, consider your findings in light of how the patient usually conveys sadness or happiness, anger, worry, or fear through facial expressions, movement, or vocalizations. Don’t assume the patient’s behavior is secondary to the ID, as this could blind you to the possibility that the behavior change stems from pain.

Next, determine if the patient is able to complete the usual tasks at school, in a sheltered workshop, or in the workplace as appropriate. Does he or she demonstrate unusual fatigue or behaviors not previously present, such as biting or rubbing a body part? Have the patient’s eating or sleeping patterns changed recently? Carefully document observed behaviors, their circumstances, interventions used, and the patient’s response.

Explore how the patient usually acts in situations that might cause pain. How does current behavior compare to previous behavior in response to fear, anxiety, worry, hunger, infection, or pain? For instance, instead of crying when in pain, does the patient now show anger? Such behavior may become problematic if temper tantrums occur or increase in severity, or if the patient becomes aggressive or destructive. (See the box below.)

Self-injury in patients with IDs

Patients with IDs may injure themselves when in pain—for instance, by hitting their head, biting themselves, or rubbing body parts (particularly the backs of the arms and hands). One study suggests such behavior may mitigate pain. Increased or decreased head and body movements (rocking, pacing, or complete stillness) and increased sensitivity to touch also may signal pain. Some patients may lash out at others. Children with IDs reportedly have bitten others when experiencing pain induced by muscle spasms.

Other indications of pain include vocal and facial expressions that deviate from the usual. Vocalizations may include crying, moaning, grimacing, and grunting. Note how these sounds differ from the patient’s usual vocalizations. Are they higher or lower in pitch? Some patients may show atypical reactions to pain, such as laughing. But always consider the context; some patients with ID may make the same sounds whether excited, happy, or in pain.

Does the patient have a flat affect, a taut facial expression, or no facial expression at all? This may relate to fatigue caused by an attempt to cope with pain. Other facial changes possibly associated with pain include flushing or pallor. If these occur, try to rule out fever, infection, or an impending seizure. Take into account family members’ or caregivers’ observations of the patient’s previous skin color changes when trying to determine their cause.

Be aware that increased seizure frequency occurs in some patients with ID. Yet seizures can be triggered by other stimuli, such as allergies or heat.

Finally, obtain the patient’s vital signs, including heart rate and blood pressure, to help identify deviations from baseline. Remember—a rise in heart rate or blood pressure may be the sole indication of pain in a patient with ID.

During the patient’s annual assessment, document and review pain responses for the benefit of those unfamiliar with the patient—especially other nurses, paraprofessionals, group home workers, and sheltered workshop supervisors. Document the patient’s developmental level, too, to help others evaluate the patient’s observed response to pain.

Michael’s responses to pain

Throughout his life, Michael has exhibited many atypical responses to pain. As a young child, he never cried when he drove his tractor down brick steps; instead, he became angry at the tractor. As a preschooler, he occasionally had ear infections that went undetected until family members noted blood and pus running down from the ear. Because he had multiple severe respiratory infections, he commonly had facial flushing associated with a fever. With careful observation and after several more ear infections, family members and caregivers were able to determine if the flushing stemmed from pain or an ear infection.

To an astute observer, Michael’s recent behavior changes might have warned of a serious condition (namely, the nasopharyngeal tumor with which he ultimately was diagnosed). For several months before the tumor was detected, he’d been licking his fingers and then rubbing his ears, causing his ear lobes to look dirty. Also, instead of sleeping through the night, he slept during the day at school. He began rubbing the top of his head and showing changes in movements—increased restlessness and trouble standing still. Sometimes, he collapsed in fatigue. Also, his blood pressure rose and didn’t drop significantly with antihypertensive drugs. Only when the tumor was well advanced did he occasionally show distress through his facial expressions.

Intervention and evaluation

When choosing an appropriate method to manage pain in a patient with ID, healthcare providers should identify what has helped the patient in the past. Nonpharmacologic methods should be considered first. Cold or heat application may be useful if the pain location is known; for some patients, music may be therapeutic.

Depending on the cause of pain, useful medications may include muscle relaxants, nonsteroidal anti-inflammatory drugs, anticonvulsants (such as gabapentin), and proton pump inhibitors. When medication efficacy is hard to assess, it’s more common to undermedicate than overmedicate. But in this population, metabolic conditions may lead to drug malabsorption or genetic differences in drug effects. Also, keep in mind the patient may already be taking multiple drugs that affect the CNS and other body systems; these medications may have an additive or synergistic effect with pain medications, complicating pain management.

Consider pain-management measure before any procedure that would cause pain in a patient without ID. Document both pharmacologic and nonpharmacologic interventions and outcomes consistently, so their efficacy can be evaluated. Also, know that drug absorption, metabolism, and efficacy may not be well established in patients with IDs, underscoring the importance of in-depth assessment of individual responses to drugs and other interventions.

When developing a plan of care for pain management, consider potential adverse drug effects and the patient’s swallowing ability. Keep in mind that opioids commonly cause constipation—which many ID patients already have due to lack of exercise and diets high in processed foods. Some patients may have eating difficulties and need to use a feeding tube for nourishment, so make sure prescribed drugs are congruent with the patient’s overall health and nutrition status. Inappropriate medications may add to the patient’s discomfort.

For Michael, who expressed considerable discomfort and refused to eat because of pain, one physician prescribed liquid morphine. This choice was inappropriate because Michael was experiencing stomatitis due to chemotherapy, and alcohol and sugar in the morphine syrup base caused even more discomfort. He was switched to acetaminophen for several months, until increasing complications necessitated a switch to hydrocodone with acetaminophen; when Michael could no longer swallow, he was put on a fentanyl patch.

Interestingly, Michael’s own choice for pain relief was a warm bath. Perhaps the bath eased his pain by helping him relax, or maybe it distracted him from the pain.


Longitudinal research on behaviors of ID patients over the life span is needed to determine whether adults’ pain-related behaviors are similar to their childhood behaviors. Drug metabolism studies and research on palliative care for this vulnerable population also would be useful.

To manage pain arising as the patient ages, caregivers should carefully document behaviors, their circumstances, and interventions used. They should advocate for appropriate pain evaluation and management to optimize qualify of life for these patients. Those working with these patients on a daily basis should be educated on pain recognition. Following these recommendations can help ensure that misperceptions of pain-related behavior don’t lead them to ignore or undertreat pain in patients with IDs.

Marilyn Masterson is an assistant professor of nursing at Washburn University in Topeka, Kansas.

Selected references

Baghdadi A, Picot MC, Pry R, et al. What factors are related to a negative outcome of self-injurious behaviour during childhood in pervasive developmental disorders? J Applied Res Intellect Disabil. 2008;21:142-9.

Breau L, Burkitt C. Assessing pain in children with intellectual disabilities. Pain Res Manag. 2009;14(2):116-20.

Burkitt C, Breau L, Salsman S, et al. Pilot study of the feasibility of the non-communicating children’s pain checklist revised for pain assessment for adults with intellectual disability. J Pain Manag. 2009;2(1):37-49.

Carr E, Owen-DeSchryver J. Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities. J Autism Dev Disord. 2007;37:413-24.

Dubois A, Capdevila X, Bringuier S, Pry R. Pain expression in children with an intellectual disability. Euro J Pain. 2010;14(6):654-60.

McGuire BE, Daly P, Smyth F. Chronic pain in people with an intellectual disability: under-recognised and under-treated? J Intellect Disabil Res. 2010; 54(part 3):240-5.

Oesburg B, Jansen DEMC, Dijkstra GJ, Groothoff, JW, Reijneveld SA. Prevalence of chronic diseases in adolescents with intellectual disability. Res Dev Disabil. 2010;31:698-704.

Phan A, Edwards C, Robinson E. The assessment of pain and discomfort in individuals with mental retardation. Res Dev Disabil. 2005;26:433-9.

Solodiuk JC, Scot-Sutherland J, Meyers M, et al. Validation of the individualized numeric rating scale (INRS): A pain assessment tool for nonverbal children with intellectual disability. Pain. 2010;150:231-6.

Symons FJ, Thompson T. Self-injurious behaviour and body site preference. J Intellect Disabil Res. 1997;41(part 6):456-68.

Tordjman S, Anderson GM, Botbol M, et al. Pain reactivity and plasma beta-endorphin in children and adolescents with autistic disorder. PLoS One. 2009 Aug 26;4(8):e5289. doi: 10.1371/journal.pone.0005289

Turk V, Kerry S, Corney R, Rowlands G, Khattran S. Why some adults with intellectual disability consult their general practitioner more than others. J Intellect Disabil Res. 2010. 54(9):833-42.

Yamaguchi M, Takeda K, Onishi M, Deguchi M, Higashi T. Non-verbal communication method based on a biochemical marker for people with severe motor and intellectual disabilities. J Int Med Res. 2006;34:30-41.

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