Everybody Hurts: People May Feel Pain But Not Treat It
To understand the impact of chronic pain in a community — as small as a neighborhood in Scotland or as big as the entire United States — you need to understand the concept of expressed need.
This is a term that researchers have used for decades to understand the why some people seek medical care for certain conditions. Some pregnant women seek dietary advice. Some older adults want hearing aids. And for some people, pain is a more significant factor in their lives than for other people, and so they seek treatment.
One person might fall down a flight of stairs and have lingering pain that lasts for months but that they manage with a few Tylenols a day. Nothing about their daily routine changes. Another person might take that same fall in the same way and feel the same level of pain but respond very differently. They may want to avoid all actions that exacerbate that pain even a little bit, and they may go to a pain specialist and seek physical therapy or painkillers or both.
Alison Elliott at the University of Aberdeen in Scotland and her colleagues published a paper in 1999 that has been used as the basis for the claim that 150 million Americans suffer from chronic pain – despite Elliott’s own misgivings about such extrapolations.
One of the many ways that authors who cite Elliott’s work misunderstand her research, though, is that they don’t consider the concept of expressed need. Elliott and colleagues found:
Of those who reported chronic pain, 312 (17.2%) reported no expressed need, and 509 (28.0%) reported the highest expressed need.
So while their first pass at the data revealed that about half of all people surveyed in Scotland experienced pain broadly defined, as they filtered out those people for whom pain was not particularly severe or significant, they came up with a much smaller group of people.
By using validated measures of the severity and significance of chronic pain we were able to examine chronic pain at different levels. This meant that in addition to providing prevalence rates for ‘any chronic pain’ we also established the prevalence of severe and significant chronic pain. It is these latter prevalence rates that are likely to be of greatest clinical significance and of more use to physicians and health service planners than the 50% estimate of ‘any chronic pain’.
Why is that? They published a paper in 2001 in Family Practice all about that called “The impact of chronic pain in the community.” They wrote:
If chronic pain affects around half of the population, this presumably includes much that might be considered as minor, or not intrusive enough to require medical attention or treatment. Our definition of ‘significant chronic pain’ may reflect the proportion of chronic pain which places most demands on the health services, while ‘severe chronic pain’ may reflect that which has the greatest impact on individuals, and so presumably might be most likely to benefit from effective treatment.
So what are these different categories of pain?
‘Any chronic pain’—continuous or intermittent pain or discomfort which has persisted for at least 3 months.
‘Significant chronic pain’—continuous or intermittent pain or discomfort which has persisted for at least 3 months, and for which painkillers have been taken and treatment sought recently and frequently. This represents the most severe level of expressed need as defined in our previous work.
‘Severe chronic pain’—continuous or intermittent pain or discomfort which has persisted for at least 3 months, resulting in high disability and severe limitation.
Let’s use these definitions and make the same leap that American authors have made by importing those trends to the United States and doing the math with the population of people 25 and older, which is the same group that Elliott studied. What do the population-in-pain numbers look like?
Any chronic pain: 46.5% (95 million Americans)
Significant chronic pain: 14.1% (29 million Americans)
Severe chronic pain: 6.3% (13 million Americans)
Which are the numbers that Elliott says matter? The last two: 29 million Americans in significant chronic pain and 13 million in severe pain, for a total of 42 million. That’s less than one third of the figure that some authors would like you to believe represents the number of Americans in pain.
When influential academics and advocacy organizations make claims that half of all Americans are in pain, they often use that very high rate to claim there is a huge “unmet need”.
We’ll talk about that in my next post in the Everybody Hurts series.
Next: Do We Need a Painkiller in Every Medicine Cabinet?
Photo credit: Unfurled via Flickr