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Everybody Hurts: How 2,000 Scots Became 150 Million Americans in Pain

Everybody Hurts: How 2,000 Scots Became 150 Million Americans in Pain

Picture of William Heisel

In 1999, The Lancet published “The epidemiology of chronic pain in the community” by Drs. Alison Eliott and Blair Smith at the University of Aberdeen and coauthors.

It was a survey of 5,036 patients from 29 general practices in one region in Scotland. The study received responses from 3,605 people. About half of them said they had chronic pain. And that has since been used as the basis for the claim that 75 million to 150 million Americans also have chronic pain but that very few of them – 3 million to be exact – are treated for it.

Here’s my attempt to figure out how that happened.

For the Scotland study, respondents filled out and mailed in questionnaires that included, as the study explains, “case-screening questions, a question on the cause of the pain, the chronic pain grade questionnaire, the level of expressed needs questionnaire, and sociodemographic questions.”

The paper on the Scotland study breaks down the findings this way:

1817 (50·4%) of patients self reported chronic pain, equivalent to 46·5% of the general population. 576 reported back pain and 570 reported arthritis; these were the most common complaints and accounted for a third of all complaints. Backward stepwise logistic-regression modelling identified age, sex, housing tenure, and employment status as significant predictors of the presence of chronic pain in the community. 703 (48·7%) individuals with chronic pain had the least severe grade of pain, and 228 (15·8%) the most severe grade. Of those who reported chronic pain, 312 (17·2%) reported no expressed need, and 509 (28·0%) reported the highest expressed need.

The researchers on the Scotland study never say there are 150 million people in pain.

They never say there are 75 million people with pain.

They never even use the word “million” at any point.

So where do those numbers come from? And why are people citing this paper as evidence that 75 million to 150 million people are in pain?

I asked Dr. Dennis C. Turk, an anesthesiology professor at the University of Washington who cited the Scotland study for the claim that 75 million to 150 million people are in chronic pain. He did not address how estimates of Americans in pain came from the Scotland study specifically, but said that pain statistics are difficult to pin down.

There are a lot of assumptions and extrapolations that are required in deriving estimates from epidemiological data. Much of the variation in estimates will depend on how questions are asked and the anchors used (e.g., time interval of question, impact on function) and the sample selection.

Turk recommended that I look at an Institute of Medicine report that was published in 2011 – six years after his article was published. (I will address that in a future post.)

I could not find a way to derive the 75 million figure from the pain estimates in the Scotland paper, although there are no doubt people better adept at math who could do so. Here’s my best guess on the 150 million figure.

The study estimates that based on this survey 46.5% of the general population of Scotland suffers from chronic pain.

If you extrapolated that to the entire population of the U.S. – about 309 million people – that would mean about 144 million people in the U.S. suffer from pain. Rounding up, you get 150 million people.

Does it seem like a reasonable leap to make assumptions about 150 million people in the U.S. based on responses from fewer than 2,000 people in Scotland who may have been more motivated to reply to a survey about pain because they were, in fact, suffering from chronic pain?

In all fairness, similar leaps from small samples to large populations are made all the time. Researchers can’t possibly persuade every person in a city – let alone an entire country – to fill out questionnaires about their health. There are about 5 million people in Scotland. The survey tapped about 0.07% of the population for this study. That’s not far off from the largest telephone survey in the world, the Behavioral Risk Factor Surveillance System (BRFSS) by the Centers for Disease Control and Prevention, which captures about 0.12% of the population annually. Much of what we know about health trends in the U.S. comes from the BRFSS.

But the leap across the pond is a little more problematic. We’ll get into that in Friday’s post.

Next: Why Pain Is Not the Same at Every Age and in Every Place

Image by Giorgio Quassi via Flickr

Comments

Picture of <span class="username">Guest (not verified)</span>

Hi William. Important topic. The numbers you recount in this and the last post reveal problems in how we measure/calculate pain and, presumably, how doctors justify the prescription of narcotics. That said, I'm concerned about the "questioning pain" thread that runs through this series. Historically, physicians under-prescribed pain meds to patients they didn't trust or believe were really having serious pain, even when they were in agony. This happened more often to women and minorities.

Picture of Julia Kyles

Thanks for following this. A couple of things to consider.

According to the CDC, 50 million adults suffer from arthritis, the symptoms of which include pain. 

It may also help to take a look at the definition of chronic pain. From NIH:

While acute pain is a normal sensation triggered in the nervous system to alert you to possible injury and the need to take care of yourself, chronic pain is different. Chronic pain persists. Pain signals keep firing in the nervous system for weeks, months, even years. There may have been an initial mishap -- sprained back, serious infection, or there may be an ongoing cause of pain -- arthritis, cancer, ear infection, but some people suffer chronic pain in the absence of any past injury or evidence of body damage. Many chronic pain conditions affect older adults. Common chronic pain complaints include headache, low back pain, cancer pain, arthritis pain, neurogenic pain (pain resulting from damage to the peripheral nerves or to the central nervous system itself), psychogenic pain (pain not due to past disease or injury or any visible sign of damage inside or outside the nervous system).  A person may have two or more co-existing chronic pain conditions.  Such conditions can include chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, temporomandibular joint dysfunction, and vulvodynia.  It is not known whether these disorders share a common cause.

Note that this definition doesn't say anything about severity of pain or impact on quality of life or ability to perform ADLs and so on. Chronic pain is a pain that persists, nothing more or less.

So yes, if the narrative is "Goodness, 150 million Americans are in agony!" that is incorrect. But given the stats on arthritis alone "150 million Americans experience some sort of persistent pain," seems a bit low, if anything.

Picture of <span class="username">Guest (not verified)</span>

I think you nailed it when you pointed out that the survey suffered from selection bias. That is, the respondents all had a motive to be in the study, i.e. pain.

The fact that this is extrapolated across the entire population is not surprising given the scientific reliance on deterministic methods enshrined in Fischer's. Neither are logically correct.

Still, chronic pain is a big problem in the U.S. and is reportedly under treated due to irrational fears of opiate addiction. Alternative drugs simply are not as effective, and addiction is more a function of the poor quality of street drugs and individual biochemistry (which admittedly cannot be predicted) than it is of some magical quality of the drugs themselves.

Especially when compared to synthetic alternatives, physicians should be fee to prescribe these drugs as medically necessary as opposed to legal or economic requirements.

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