Cover Story

On Oct. 23, 1993, Saskatchewan farmer Robert Latimer gassed his 12-year-old daughter, Tracy, in the family pickup truck. Tracy was severely physically and mentally disabled by cerebral palsy. In his trial for murder, Latimer asserted that he had killed his daughter because she was in constant and uncontrollable pain.

The highly publicized case set off fierce debate in the Canadian media and among disability and patients' groups. For many experts on pediatric pain, Tracy Latimer's death underscored the urgency of gaining a better understanding of pain in cognitively impaired children and how it is managed.

Children with cognitive impairments often have underlying medical conditions that cause pain and necessitate surgery, physical therapy and other painful diagnostic and treatment procedures. Compounding this problem, in many cases pain may go untreated because children are unable to communicate its presence and intensity.

Despite this heightened risk for pain, until recently there was little research on pain assessment and treatment in cognitively impaired children. Although research on pain in normally developing children has grown rapidly since the 1980s, when researchers first began to recognize that infants and young children are sensitive to pain, research with cognitively impaired children has lagged far behind.

Indeed, observes psychologist Debra Fanurik, PhD, a professor of anesthesia and pediatrics at the Arkansas Children's Hospital in Little Rock, Ark., children with cognitive deficits are usually deliberately excluded from participation in research studies.

One reason for investigators' reluctance to delve into studying children with cognitive impairment is that pain is so difficult to measure in this population, explains psychologist Patrick J. McGrath, PhD, of Dalhousie University and the IWK Health Centre in Halifax, Nova Scotia.

But also, he argues, "These children are devalued. There is no doubt in my mind that as a culture, we place less value on their lives than on children who are not cognitively impaired."

For the past several years, McGrath and Fanurik and their respective colleagues have been at the forefront of research exploring pain in cognitively impaired children. The research, they hope, will eventually help reduce needless suffering in a population of children who are already overburdened.

Developing measurement tools

Before pain management practices for cognitively impaired children can be addressed, researchers agree, the first priority in research with cognitively impaired children is to develop accurate and reliable ways of measuring pain in children who cannot complete self-report pain measures.

"Without measures," says McGrath, "you don't have science--it's just opinion and conjecture."

In a study of 47 children with borderline to profound cognitive impairment, published in the journal Clinical Nursing Research (Vol. 7, No. 2) in 1998, Fanurik and colleagues found that half of children with borderline impairment and one-third of children with mild impairment were able to correctly use a simple, numerical pain-rating scale. However, the researchers found, a good proportion of children with mild to moderate impairment could understand the concepts underlying the rating scale.

These findings are promising, Fanurik says, and point to the need for evaluating simpler self-report measures of pain for children with mild to moderate impairments in cognitive functioning. Further, she adds, a finding that anesthesia nurses overestimated the impaired children's ability to correctly use the numerical rating scale suggest that health-care providers need to be sure that children with mild impairment fully comprehend and can demonstrate the use of a pain-rating scale before using it in clinical situations.

For children with more severe cognitive impairment, however, self-report measures--no matter how simple--are not an option. Instead, clinicians must rely on a third party's assessment of children's pain. The best candidates, McGrath and his colleagues believe, are parents or other caregivers, who know the children best.

In a 1998 study in the journal Developmental Medicine and Child Neurology (Vol. 40), McGrath and colleagues asked caregivers of 20 cognitively impaired children how they knew when their children were in pain.

From their interviews, the team developed a checklist of 30 items, including cues such as crying and moaning, eating or sleeping less than usual, acting irritable or withdrawn, flinching in response to touch, becoming less active or more agitated, rigid or spastic body movements, gesturing toward or favoring parts of the body that hurt, changes in pallor and gasping.

In follow-up validation studies, McGrath, graduate student Lynn Breau and other colleagues demonstrated that their measure, called the Non-Communicating Children's Pain Checklist, was reliable over time and sensitive to differences in children's responses to pain versus otherwise distressing events. More recently, with colleagues in England, they've identified a smaller set of six cues that reliably signal pain in cognitively impaired children--a simpler assessment tool that should prove useful in clinical settings.

Finally, in the March issue of the journal Anesthesiology (Vol. 96, No. 3), Breau, McGrath and colleagues reported that their checklist is effective for detecting pain in children in postoperative situations and can by used by nurses, even when they don't know their patients well.

That's important because research has shown that more than half of surgical patients experience moderate to severe postoperative pain, comments Zeev N. Kain, MD, a professor of anesthesiology in the Yale University School of Medicine who wrote an editorial accompanying the report. In children with major cognitive disabilities, he says, anesthesiologists have reported significant difficulty assessing postoperative pain.

Kain adds, "There must be a closing of the gap between clinical assessment and scientific measurement, especially if pain and suffering are to be decimated in the compromised child."

Next steps

With dependable measurement tools in hand, psychologists can now begin to more fully study pain in cognitively impaired children. For example:

  • Researchers are starting to examine the accuracy of parents', physicians' and nurses' beliefs about pain in cognitively impaired children and to assess how appropriately pain is managed. McGrath's group is working to identify an effective clinical care plan for treating pain in cognitively impaired children. In what is known as a "Delphi poll," they are asking experts for their opinion on how best to detect specific kinds of pain in this population and how to treat it. After some consensus emerges, the researchers can then begin to test treatment methods in clinical trials.

  • Many children with severe cognitive impairments engage in self-injurious behavior, such as repeatedly banging their heads or scratching, biting or gouging themselves. For a significant minority of these children, the cause of this self-injury is unknown. McGrath and University of Minnesota educational psychologist Frank Symons, PhD, are exploring how chronic pain may be related to self-injury in children who are cognitively impaired--an avenue of research that they hope will eventually lead to more effective ways of curbing the self-injurious behavior.

  • With Bonnie Stevens, RN, PhD, of the Hospital for Sick Children in Toronto, McGrath is beginning studies with babies who are at risk for neurological impairment because of congenital anomalies, infectious processes such as meningitis or other medical conditions associated with prematurity and very low birth weight. They hope to determine the prevalence of pain in these infants, how the babies respond to pain, how it is typically managed and how health providers' beliefs and attitudes about pain in at-risk infants affect pain management.

When she first began research in this area, Stevens informally asked clinicians how they thought pain was managed in babies at risk for neurological impairment. Many responded that these babies may be subjected to more painful procedures with inadequate pain management because health providers don't tend to recognize that they are in pain.

But, Stevens says, "I believe that these infants are capable of experiencing pain just as other infants are. Even though assessing their pain might be more of a challenge, it's absolutely necessary that we turn our attention to them. They deserve and require good pain management."