Widespread unaddressed arthritis pain prompts physicians to 'rethink the conversation'
Click Here to Manage Email Alerts
Findings from the Live Yes! INSIGHTS survey from the Arthritis Foundation showed that out of some 40,000 patient responses, 100% reported experiencing some kind of pain within the last 7 days.
That figure bears repeating: 100%.
“The biggest finding was how pervasive and prevalent pain is,” Steven Taylor, executive vice president of Mission & Strategic Initiatives for the Arthritis Foundation, and one of the authors of the report, told Healio Rheumatology. “It is impacting every aspect of patients’ lives.”
Like many rheumatologists who deal with patients every day, Amanda E. Nelson, MD, MSCR, RhMSUS, associate professor of medicine at the University of North Carolina’s Thurston Arthritis Research Center and member of the Arthritis Foundation’s Arthritis Expert Panel, was not surprised by this result.
“This finding brings the message home to people who do not spend their time in a clinical setting,” she said. “Patients with all kinds of different arthritic conditions were giving us the same message.”
The results should be a call to action for experts across the rheumatology field. “Clearly, the burden of pain is something we are not addressing well,” Nelson said. “We need to get into this with our patients. We need to understand their pain.”
Key Findings
In terms of understanding patient pain, both Nelson and Taylor believe this document can be an important resource. Results of the survey, as highlighted in the Arthritis Foundation’s How it Hurts report, showed that respondents were experiencing an average pain score of 5.4 on a scale of one to 10. Pain at a level of five out of 10 or higher was reported by 66% of the cohort, while 15% experienced pain at level eight out of 10 or higher.
“It is important to understand that pain can take so many different forms and present itself in so many different ways,” Taylor said. “It is there and it is prevalent.”
Understanding how this prevalence translates into the lived experience of a patient with arthritis was another important goal of the survey. The researchers found that 75% of respondents reported that pain interfered with daily life to some degree, while 74% reported that pain interfered with social activities.
Taylor believes that these findings can offer clinicians and researchers a baseline from which to “pinpoint” interventions. “Daily activities and social participation are important to patients,” he said.
This information should serve as a jump-off point for a deeper conversation, because pain can mean different things to different patients, according to Nelson.
“How we ask questions about pain is a problem in the research,” she said. “We are still not asking whether the pain is chronic or acute or surprising. We are just asking if it is moderate or severe.”
Of larger concern is that some clinicians may not be asking about pain at all. “We spend a lot of time in any given visit asking about inflamed joints and seeing if they have progression of disease,” Nelson said. “We need to rethink the conversation.”
Further data showed that just shy of half of respondents could not walk for 15 minutes without pain, while 62% of patients reported issues with getting up and down stairs. Nelson suggested that this latter data point is indicative of how they interpret the experience of their disease.
“The fact that they can’t go up the stairs in their house is so, so important to them,” she said.
The inability to negotiate stairs may be a symptom of larger concerns illuminated by the How It Hurts report. In addition to the pain that they feel, arthritis patients may simply not have the energy to do the things that they were once able to do.
‘Ugly cycle’
Sleep and fatigue are companion issues that many arthritis patients report as being critical components of their disease. The survey showed that half of patients reported difficulty sleeping, while 49% reported moderate or severe symptoms of fatigue.
“Feelings of fatigue have skyrocketed in 2019 to 2020,” Taylor said. However, he noted that while the stress of the pandemic did create additional challenges for arthritis patients, it did not seem to affect these levels. “We were seeing these numbers go up well before COVID-19.”
The pandemic likely just exacerbated issues that this patient population has long dealt with, according to Nelson. “If you don’t sleep, you are fatigued, which amplifies the pain,” Nelson said. “It is an ugly cycle that I talk to my patients about all the time.”
The cycle brings patients back to the inability to participate in daily activities, according to Taylor. “It all ties together, and it is so upsetting for people with arthritis,” he said. “We are hoping to use these data to change the focus and present services that target those things.”
The good news is that organizations like the American College of Rheumatology have begun to recognize not only pain, but sleep and fatigue as worthy clinical factors. “The 2019 ACR osteoarthritis guidelines address these aspects of the condition,” Nelson said. “But we as individual practitioners have to address the fact that patients are miserable because they are fatigued and not sleeping well.”
Changing the Narrative
As the rheumatology community looks to change the narrative about how physicians, researchers and professional societies address pain, two more data points may be worth investigating. The How It Hurts report showed that “disruptive” pain levels were disproportionately high in two patient groups: those with an income of $15,000 per year or less (83%) and those with education levels of high school or less (77%).
This raises the obvious question: why?
“One explanation is that patients with lower education levels and lower socioeconomic status are less likely to be insured, and therefore, have less access to any kind of health care, including rheumatology services,” Nelson said.
This, then, creates its own kind of cycle, where patients are not being treated, and they develop more damage from their disease, which leads to higher levels of disability.
“As a specialty, we have not been great at addressing these issues, as well,” Nelson said. “It is not broadly known that individuals on the lower end of the socioeconomic spectrum are fighting these battles.”
The size of the current survey “emphasizes the point” that this is something that needs to be addressed, according to Nelson. “We need to think about getting patients access, we need to think about transportation and physician workforce issues,” she said. “Educating our primary care colleagues to treat these conditions will also be an important way to make sure we are reaching these patients.”
For Taylor, it is essential to build trust with the subpopulation that faces socioeconomic hurdles, helping to build a working partnership with their treating physician. “Do these patients feel comfortable talking about anything, including pain, with their doctor?” he said. “Do they feel comfortable and empowered asking questions during their appointments?”
The answers to these questions, along with those pertaining to pain in arthritic conditions, are not simple. But Nelson believes that awareness is increasing. “Fellowship programs are picking up on the importance of pain and how it impacts individual patients,” she said. “The fact that pain management is taking a larger place in ACR guidelines is a good sign, but it needs to be part of all guidelines.”
Ultimately, Nelson encouraged rheumatologists to have conversations about pain with their patients, but not to expect the broader issues of pain management to be resolved overnight. “Change in medicine is slow,” she said.
For more information:
Amanda E Nelson, MD, MSCR, RhMSUS, can be reached at 3300 Thurston Building, Box 7280, Chapel Hill, NC 27599-7280; email: margo@mindfulkreative.com.
Steven Taylor can be reached at 1355 Peachtree Street, Suite 600 Atlanta, GA 30309; email: margo@mindfulkreative.com.
Collapse
How It Hurts report: https://www.arthritis.org/howithurts
Click Here to Manage Email Alerts