Anyone who has ever been severely injured in an accident, had surgery, or been diagnosed with a chronic illness knows that one of the most difficult parts of a doctor’s visit is trying to explain the quality and severity of your pain. Now, researchers are working to make that process easier for patients and their doctors.
“Pain research is very difficult because nothing allows the physician to see the patient’s pain directly,” says Werner Ceusters, MD, professor of psychiatry in University at Buffalo’s School of Medicine and Biomedical Sciences, and principal investigator on a new National Institutes of Health grant, An Ontology for Pain and Related Disability, Mental Health and Quality of Life. “The patient has to describe what he or she is feeling.”
Anyone who has ever lived with pain knows that describing it is no easy task. Typically, the first step is for the physician to ask about severity: On a scale of 0 to 10, where 0 is no pain, and 10 is pain severe enough to send you to the emergency room, how would you describe your pain. That might be easy to rate the pain at the moment, but if you go 3 months between doctor appointments, it doesn’t suffice. Some pain spikes to level-10, but settles back at a level-5. And sometimes, living for months or years with level-6 pain can make a person feel helpless and hopeless.
The next step is to describe the pain. Healthcare workers sometimes offer a list of acceptable adjectives: Burning, stabbing, aching, sharp, dull. That doesn’t begin to cover it. What if the pain is like nothing you’ve ever felt, and the only word that seems to describe it is, simply, pain? What if the pain feels like tiny trucks are driving over your bones–does that description make sense to a doctor?
In an article in ScienceDaily, researcher Ceusters says:
…each patient’s subjective experience of pain is different. Descriptions of pain therefore lack the precision and specificity that is taken for granted with other disorders, where biomarkers or physiological indicators reveal what health-care providers need in order to assess the severity of a particular disorder.
An added complication is that people have different vocabularies, different linguistic capabilities, and different cultural backgrounds, all of which can affect how people evaluate and describe pain. That’s why Ceusters is beginning to find ways to describe pain in uniform, formal ways. His research, funded by a grant from the National Institutes of Health, will study data gathered from thousands of patients with chronic pain in the United States, the United Kingdom, Sweden, Israel, and Germany.
In the end, the goal will be to represent what pain is, and how it relates to body parts, activities, and functions. According to Ceusters:
“Our goal is to create a software program that will allow all pain specialists to express themselves in crystal clear terms,” he says, “We will create a symptom checklist that can be understood by computers. We have to define the terminology of pain.”
For people whose lives are defined by pain, that is a worthy goal that could eventually lead to a greater understanding and treatment of a variety of chronic pain conditions.