Sitting on the therapy table, with my legs stretched out and an ice pack wrapped around each knee, I told my amiable physical therapist Jeff all about my history of knee pain. I brought up the February run that set off the pain, recalled prior stints in PT and rattled off a list of treatments I’d tried. I told him that both knees hurt, but rarely at the same time, and regaled him with my journey through arch support sneakers and drugstore knee braces.
But when Jeff asked me about the pain itself, I had less to say. On a scale of 0 to 10, the pain maxed out at a… nine? A seven? I wasn’t sure if it was dull or sharp, or both or neither. All I really knew was that my knees hurt more than a set of 31-year-old joints ought to.
As someone who enjoys nothing more than rearranging words on a page, and will always defend the use of a sentence over an emoji, I felt like language had let me down.
Eventually, I just looked at Jeff and shrugged.
Pain is the most common reason people enter the healthcare system. It’s also a private, subjective experience that’s notoriously hard to communicate. For decades, doctors have primarily assessed pain by asking patients to rate pain intensity on a numerical scale and describe how it feels in words.
The fact that these assessment methods don’t work very well, particularly for patients who are young or face language or literacy barriers, is well-documented in studies and widely recognized by experts. What’s less clear is why we’re still relying on them. Some researchers doubt we can do much better until we have technology advanced enough to measure pain directly, but Charles Jonassaint, a clinical health psychologist and professor at the University of Pittsburgh School of Medicine, believes we’re just stuck in a holding pattern. Earlier this year, Jonassaint and colleagues introduced an app that lets patients literally see their pain in a new way.
“We’ve been asking patients to use the 0 to 10 scale or describe their pain for so long that I think it can be hard to conceptualize anything different,” Jonassaint said, “but there’s no reason we can’t move away from these same tired ideas.”
Pain is the primary complaint for more than 80 percent of medical appointments. That figure accounts for at least 116 million Americans with longer-term chronic pain, sometimes caused by chronic conditions such as fibromyalgia, arthritis, Lyme disease and multiple sclerosis. It also includes all the short-term (or acute) pain — broken ankles, torn ACLs, incapacitating stomach aches — that brings patients into primary care offices, emergency departments and urgent care centers on a daily basis.
Much of the time, research suggests, attempts to communicate pain are a two-sided struggle. In studies, both doctors and patients have described discussions of pain as difficult, frustrating and time-consuming. In one study, 76 percent of physicians identified poor pain communication and assessment as the greatest barrier to successful pain management. Experts even believe that the opioid crisis stems at least in part from poor pain communication.
Back in 1996, the American Pain Society launched the “pain as the fifth vital sign” campaign, with the goal of making pain assessments a standard measure of patient wellbeing during every medical visit. The initiative was forward-thinking, but the recommended method for assessing pain, a 0 to 10 rating, was more of the same.
A history of scales and words
Pain can manifest with physical symptoms, like bruising and swelling, from which doctors can extract diagnostic information. But because outward signs can be deceiving, and some pain only wreaks invisible havoc, doctors also rely on self-report, i.e., what patients say about their pain. This wasn’t always the norm, according to Amanda C. Williams, a health psychologist at University College London who studies pain. Back in the 1950s and ‘60s, doctors in clinical pain medicine trials measured pain on patients’ behalf, without their input. “The context of just being asked about pain makes a big difference,” Williams said. “Clinicians tend to discount patients’ pain, particularly high levels of pain, and particularly in women, ethnic minorities, the very young and very old, among other groups.”
Today, doctors usually ask patients to self-report their pain in two ways.
First, they ask patients to rate their pain on some type of one-dimensional scale. The most famous one is the ubiquitous 0 to 10 scale, where numerical ratings correspond to mild (1 to 3), moderate (4 to 6) or severe (7 to 10) pain. There are also non-numerical scales: Word scales might range from “no pain” to “worst pain possible,” while visual analogue scales use symbols or pictures.
Doctors can collect scale ratings informally, but they can also use standardized assessment tools, most of which have been around for a while. The Wong-Baker Faces Pain Rating Scale, with its sequence of happy to sad cartoon faces, has been hanging in every pediatrician’s office since the early 1980s. The Brief Pain Inventory, a short questionnaire with multiple scales, was created for adult cancer patients in 1983.
Pain scales are supposed to be a quick, straightforward gauge of pain intensity. But they yield information with no objective meaning; ratings are influenced by various factors, including how sensitive patients are to pain and how likely they are to catastrophize or minimize their suffering. And by reducing a complex internal experience to a single value, these scales often have the opposite-than-intended effect, leaving patients confused and delaying proper diagnosis.
“Younger children just tend to choose the smiley face because they like it,” Williams said, “even when they have a lot of pain.”
Scales aren’t a reliable way to measure relative changes in the same person’s pain over time, either. “I have some patients,” Jonassaint said, “who, when they’re in the hospital getting pain treatment, I’ll ask, ‘What’s your pain?’ and they’ll say, ‘Oh, it’s an eight,’ and then after another dose of pain treatment, they’ll still say it’s an eight, and we almost get into a process of these pain ratings becoming automatic.”
Second, doctors often ask patients to describe how their pain feels. Pain language was systematized in 1970 with the introduction of the McGill Pain Questionnaire, but research suggests that words like dull, sharp, splitting, lacerating and throbbing aren’t actually that helpful. In one 1992 study, patients tried to match different types of pain with the most appropriate adjective, and ended up choosing an average of 10 types of pain per adjective.
Even with a rich, nimble vocabulary, it can be tough to describe pain with satisfactory nuance or precision. In her 1926 essay “On Being Ill,” Virginia Woolf famously noted the paucity of pain descriptions in literature: “The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”
While pain assessments could be frustrating and unproductive for anyone with sickle cell disease, the process disproportionately affected patients from underserved communities.
The shortcomings of pain descriptions are especially pronounced for children, as well as patients who have low literacy or don’t speak the same language as their doctors. While translation might seem like an obvious way to bridge a language gap, research suggests pain words are somewhat culture-dependent. One 2016 study on musculoskeletal pain found that Nepalese patients had no comparable word for “achy,” a staple pain descriptor in the U.S.
Ultimately, though, doctors may not even take patients’ descriptions into consideration. “The sense I get from speaking to dozens of physicians, nurses and physician assistants,” Jonassaint said, “is that providers don’t care about how your pain feels. They just want to know whether you need some type of pain relief or if there is a more significant underlying issue that needs to be addressed. Telling your doctor the pain is aching versus burning typically doesn’t help because those descriptors have not been closely linked to any medical outcomes. So for providers, it’s often ‘who cares.”’
There are newer pain assessment tools available, including a number of apps, like Catch My Pain. But most of them are still rooted in the same methods as their pen-and-paper forebears — scales and pain words, with a touch-screen upgrade.
“With most of these apps,” Williams said, “either they look like the old paper-and-pencil things, and they’ve just been transferred to a screen, developed by clinicians with too little technical help, or they’re very whizzy and user-friendly but they run short of clinical utility and meaning.”
Jonassaint doesn’t see the point of repackaging old concepts. That’s why he, along with a team of doctors, programmers and scientists from the University of Pittsburgh, Carnegie Mellon University and Duke University, developed Painimation, an app that translates pain into abstract animations.
Jonassaint’s pain communication work is an offshoot of his primary clinical focus, sickle cell disease, a genetic condition with chronic pain as a hallmark symptom. Sickle cell patients, Jonassaint said, exemplify the impact of healthcare disparities. He noticed that while pain assessments could be frustrating and unproductive for anyone with sickle cell disease, the process disproportionately affected patients from underserved communities. So Jonassaint and his team set out to create an assessment tool that any patient could use, regardless of their age, native language, literacy level or comfort complaining to doctors.
They introduced a trial version of Painimation in June, after testing the app in a study of 170 patients at the University of Pittsburgh Medical Center pain clinic. The study results were published in August in the Journal of Medical Internet Research.
Here’s how Painimation works: Using an iPad, you mark pain location on a 3D manikin. Next, you view eight animations (“painimations”) and select the one that best matches how your pain feels. They all resemble lo-fi graphics from ‘80s music videos — or maybe rudimentary Windows screensavers — and each one represents a different pain sensation (pounding, shooting, throbbing, tingling, cramping, burning, stabbing, electrifying). Then, to make the animation look as much like your pain as possible, you use a sliding scale to increase or decrease its speed, color saturation, focus and size. The app allows users to create up to five animations per pain complaint. Responses yield information about the location, percentage of bodily coverage, sensory properties and 1 to 100 intensity rank for each animation.
At this point, Painimation is a research tool, and it won’t be making its way into exam rooms for “some time,” Jonassaint says. His team is currently studying Painimation by putting patients with pancreatitis and sickle cell disease, as well as some with no history of diagnosed pain, through sensory testing. After sticking their hands in an ice bucket or receiving a pin prick, they’ll use Painimation to describe the resulting sensations.
It’s not hard to see how the Painimation method could help patients who have a limited capacity to talk about pain, for one reason or another. But for adults who are more fluent in pain language, does Painimation make it easier to convey pain, or does it just run into the same walls from a different angle?
No one can say for sure, but it’s possible that animations instinctively tap into the experience of a headache or a pinched nerve or dislocated joint in a way that numbers and words, born in the logical hub of the brain, just can’t. “The animations are so abstract,” Jonassaint said, “and for some of them, you might think, What’s that supposed to be? But patients still choose them, and will say, ‘Yup, that’s my pain right there.’”
Should everyone be able to say “That’s my pain right there”? In other words, how can Jonassaint’s team know the eight painimations they’ve created are universal representations of pain? Williams isn’t sure they can.
“For a few of the Painimation animations, it took me a long time to get them; I wouldn’t have chosen the ‘sharp’ one to express sharp pain,” she said. “Another tricky thing is the use of color. Red is often used to represent stronger pain and blue for weaker pain, but a lot of people with neuropathic pain will have a ‘cold’-type pain. So for someone whose pain feels colder as it gets stronger, they have real struggles with red because it means heat — not in every culture, but in many. So we need to be so careful about generalizing.”
In its current form, the app is an early version of what might become a really good but still fundamentally imperfect pain assessment tool. In the best case scenario, it will eventually blow our existing imperfect tools out of the water. To get there, Jonassaint’s team will need to address numerous limitations. For instance, Painimation is currently restricted to sighted patients, an issue for which Jonassaint sees a potential fix: “I think that we could start using elements that people can touch and handle, something that provides tactile feedback to simulate the painimations.”
Beyond limitations with potential fixes lie bigger-picture shortcomings, as pointed out by other pain researchers who nonetheless acknowledge the sophistication and creativity of Painimation, especially compared to other apps on the market.
Williams said she could see how Painimation would appeal to frustrated chronic pain patients, but she still wonders how much it could enhance the other half of pain communication — interpretation. In experiments where patients drew headache pain, she said, they enjoyed the artistic outlet, but the drawings didn’t enhance diagnosis. “Knowing precisely what pain feels like isn’t really the main issue for the clinician,” Williams said, explaining that doctors and nurses still need to establish a rapport with patients and understand other factors, such as their anxiety levels and personality traits, that affect both the physical and emotional experience of living with pain.
As I shuffled along the pavement, limping on alternating legs, I could only think about one thing: How I’d explain my pain to someone else.
And even though Bob Jamison, a clinical psychologist and professor at Harvard Medical School who developed a smartphone pain app, says Painimation has promise as a way to let doctors know what individual patients are experiencing, he still thinks we’re ultimately waiting for a true breakthrough.
“The hope is that future assessments, such as fMRI brain scans, will be sophisticated enough to be able to objectively determine pain,” he said. “In the meantime, pain remains to be what people say it is, and ways to communicate that experience, in my opinion, will remain less than ideal.”
Of course, there are degrees of “less than ideal,” and Jonassaint is eager to make strides within the realm of the non-ideal. In his view, we don’t need to eliminate subjectivity from pain assessments to make improvements. We can do a lot with the advanced tech we already have, like virtual and augmented reality and machine-learning techniques.
Jonassaint himself doesn’t necessarily see Painimation as the tool that reinvents pain communication. He just hopes it will make doctors and patients reconsider how they’ve been trained to think and talk about pain. “Our biggest barrier to success in getting people to accept Painimation,” he said, “is that it challenges the status quo. But the status quo is exactly what we need to get rid of.”
Last week, less than halfway into an evening jog, one of my knees started to hurt. When the other one followed suit, I decided to head home. As I shuffled along the pavement, limping on alternating legs, I could only think about one thing: How I’d explain my pain to someone else.
It wasn’t just a dull ache or a sharp twinge. It didn’t feel like a six or a frowny face. The pain in my knees was, to quote a handful of research papers, a “multifaceted sensory experience.” With Painimation fresh on my mind, I tried to translate my pain into abstract animations. I didn’t have the actual painimations in front of me, though, so I freestyled. I visualized a shifting, web-like mass hovering over each knee, almost like a storm front moving in, filled with fuzzy dots and vines. I could see the masses in reds or blues or neutral tones; the color didn’t seem to matter.
I can imagine how a future, souped-up version of Painimation might work: When pain sets in, I’d swipe through an expanded library of animations, combine and tweak them as necessary, and superimpose everything over a photo of my knee (thanks, VR), yielding a clinically validated picture of pain.
The right words might not be so hard to find: “Yup, that’s my pain right there.”