I am honored to currently be a participant in the National Disability Leadership Series hosted by Westchester Institute For Human Development. As part of the series, participants work together on an action project intended to improve the lives of disabled people. I am a member of the Healthcare Action Group.
When our group began talking about the barriers disabled people face in healthcare, we had plenty to say: the dismissal of female-presenting patients, the need for communication devices and assistance, mental-health advocacy… and our nearly unanimous hatred of conventional pain scales.
You know the question: “On a scale from zero to ten, how would you rate your pain?”
As someone who lives with chronic pain, I hate this question. Not because I can’t tell when I’m hurting. I am intimately familiar with hurting. The problem is figuring out how to translate an experience I live with every day into a number that means the same thing to the person asking.
What does a seven mean when you woke up at a five?
What if today’s pain isn’t dramatically more intense than yesterday’s, but today you can’t shower?
What if you’ve learned to hold a conversation, crack jokes, scroll through your phone, or sit calmly in an exam room while experiencing a level of pain that would send someone who doesn’t live with chronic pain to the emergency room?
And most importantly: does my seven mean the same thing as your seven?
Those questions sent me down a research rabbit hole.
The 0–10 Numeric Rating Scale
This is the thing most people picture when someone says “pain scale”.
0 = no pain → 10 = worst pain imaginable
Technically, this is a Numeric Rating Scale (NRS). It is often confused with the Visual Analogue Scale (VAS), but they aren’t quite the same thing. A VAS traditionally presents a continuous line between two endpoints, such as “no pain” and “worst imaginable pain,” and asks the patient to mark where their pain falls. An NRS asks the patient to select a number, commonly between zero and ten.
There’s also the Wong-Baker FACES® Pain Rating Scale, another familiar sight in hospitals and doctors’ offices. It uses six illustrated faces paired with scores from 0 to 10 and was originally developed by pediatric nurses Donna Wong and Connie Baker to help children communicate their pain. Today, it can be used with patients age three and older. Wong-Baker FACES Foundation
Despite their differences, these tools have something important in common: they make pain quick to communicate and quantify. The National Cancer Institute identifies numerical, categorical, and visual analogue scales as methods of assessing pain intensity and emphasizes that a patient’s self-report is central to pain assessment. But its simplicity is also its limitation.
It answers: “How intense is your pain?”
It doesn’t inherently answer:
- How abnormal is this pain for you?
- How does this compare with your normal level of pain?
- What can you normally do at this pain level?
- What can’t you do today?
- Has your ability to function changed even if your pain number hasn’t?
And for people who live with chronic pain, those may be some of the most important questions.
It Turns Out, Medicine Already Has Better Questions
When I first started researching alternatives, I assumed I would find a handful of different ways of asking essentially the same question: How badly does it hurt? Instead, I discovered that researchers have been trying to solve the limitations of pain-intensity scales for decades.
In 1975, psychologist Ronald Melzack introduced the McGill Pain Questionnaire (MPQ), and this is where my research started getting more interesting. Instead of asking patients to reduce their pain to a single measure of intensity, the MPQ treats pain as a multidimensional experience. It assesses three major components: the sensory experience of pain, its cognitive evaluation, and its emotional impact.
In other words, it doesn’t just ask: “How much does it hurt?”
It also tries to answer: “What does hurting feel like?”
The original questionnaire gives patients 78 words to choose from to describe their pain. Those descriptions are organized into different dimensions of the pain experience. And these aren’t just different synonyms for ouch. Sensory descriptors include words like shooting, sharp, crushing, searing, stinging, heavy, and tearing. Other categories address the emotional experience of pain with descriptors such as exhausting, sickening, fearful, and wretched.
I find this distinction particularly important as someone with chronic pain because intensity and quality aren’t interchangeable. A burning six doesn’t necessarily concern me in the same way as a sudden tearing six. A familiar throbbing pain isn’t necessarily the same experience as a new shooting pain, even if I assign both of them the exact same number.
And unlike the 0–10 scale, the MPQ has been used with populations experiencing conditions that include fibromyalgia, chronic pelvic pain, headaches, low-back pain, rheumatic pain, vulvar pain, cancer pain and several other painful conditions.
The development of the questionnaire itself tells us something about the problem we’re still trying to solve.
Melzack’s original development process drew pain words from the existing literature and had subject-matter experts classify them into sensory, affective and evaluative categories. But researchers also involved patients, alongside doctors and students, in assigning intensity values to the words.
The McGill Pain Questionnaire has also inspired another way of talking about pain that you may have encountered, particularly in chronic pain communities: the McGill Pain Index. These visual scales attempt to put different painful conditions and experiences into perspective by comparing reported pain scores.
For people whose pain is routinely underestimated, seeing their experience represented alongside other forms of severe pain can provide a tangible way to communicate something that is otherwise incredibly difficult to explain. Burning Nights CRPS Support, for example, describes these comparisons as a way for people with CRPS to communicate the severity and complexity of their pain to healthcare providers, family members, and friends.
While I understand the appeal of being able to point to a chart and say, “See? This is how much this hurts,” I’m hesitant to treat any diagnosis as having a universal pain score. After all, that’s remarkably similar to the problem that sent me down this rabbit hole in the first place: can something as subjective and individual as pain ever be neatly represented by a number?
The traditional NRS takes seconds. The MPQ asks patients to consider dozens of descriptors across multiple dimensions of their pain. That additional complexity gives healthcare providers considerably more information, but it also makes the assessment considerably more difficult to incorporate into a routine clinical encounter.
The easier we make pain to measure, the less information we collect. The more accurately we try to capture the experience of pain, the harder the assessment becomes to actually use. So perhaps the question isn’t simply whether we can design a better pain scale. Can we design one that’s better without losing the simplicity that made 0–10 so successful in the first place?
What if we only ask three questions?
This brings me to one of the pain scales I’ve found most interesting so far: the PEG scale.
Developed by Erin Krebs and colleagues in 2009, PEG was created in response to a problem that should sound pretty familiar by now: asking about pain intensity alone doesn’t tell us enough about chronic pain, but comprehensive multidimensional assessments can be too cumbersome for routine primary care.
PEG stands for:
- P — Pain average: average pain over the past week, rated 0–10.
- E — Enjoyment of life: how much pain interfered with enjoyment of life, rated 0–10.
- G — General activity: how much pain interfered with general activity, rated 0–10.
The three scores are averaged to produce an overall PEG score from 0–10.
The researchers started from the premise that pain intensity alone is inadequate for chronic pain assessment. They wanted something multidimensional that could realistically survive the time constraints of primary care. And they were surprisingly deliberate about what they left out.
For physical functioning, the researchers chose general activity rather than something like walking or working. Walking wouldn’t necessarily be an appropriate measure for a nonambulatory patient or someone experiencing upper-body pain, while employment status and occupation complicate questions about work.
Even the type of pain being measured was deliberate. Instead of asking about pain right now, PEG asks about average pain over the previous week, allowing the assessment to capture pain that fluctuates or comes and goes.
This is getting much closer to what I want from a chronic-pain assessment.
It acknowledges that how much I hurt and how much that pain interferes with my life are related pieces of information, but they aren’t the same piece of information. And it does that without handing an already exhausted patient a 78-word questionnaire. Yet, there’s still something missing for me.
What’s normal?
PEG can tell my healthcare provider that my average pain this week was a seven and that it significantly interfered with my general activity. But what if last week was also a seven? What if my normal is a five? What if my pain is still a five, but suddenly I can’t do something that I could do last week?
The more scales I look at, the more I keep coming back to the same idea: For chronic pain, the number itself may be less informative than the change. (Read the 2009 PEG development and validation study here.)
Why Do We Just Use 1–10 Scales?
I found all of this information through extensive research. Before writing this, I had never heard of most of these other pain scales. And that left me with another question: if we know the 1–10 scale has limitations, particularly for people living with chronic pain, why is it still the scale I encounter almost everywhere?
When I visit my psychiatrist, patients in the waiting room fill out questionnaires about anxiety and depression. My psychiatrist reviews my answers before bringing me back. The questionnaire doesn’t replace our conversation; it gives us somewhere to start.
Why couldn’t we approach pain similarly?
Sure, something like the McGill Pain Questionnaire takes longer than asking, “What is your pain from one to ten?” But patients already spend plenty of time sitting in waiting rooms. What if, instead of answering a single question once we reach the exam room, chronic pain patients completed a more comprehensive assessment while we waited? A doctor could walk into the room already knowing not only how much I hurt, but what the pain feels like, how it affects my functioning, and how it has changed.
The problem may not be that we don’t have better ways to measure pain. We do.
The question is whether our medical system is structured to use them.