Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity

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Will one more RA disparity study make a difference for patients?

Discrepancy & Rheumatoid Arthritis: inseparable as thunder & lightning

Discrepancy. A word I probably used three times during the first four decades of my life.

And then came Rheumatoid Disease. This word is the shortest explanation for the reason RA Warrior exists. I was stunned by the discrepancies between the experiences of people living with Rheumatoid Disease and the way it is described in medical literature.

In a very early blog post, I asked questions about discrepancies of typical Rheumatoid Arthritis. Short but to the point, it was like a Where’s the beef?ad for RA.

Later, we examined several specific discrepancies including the proper role of blood tests, conspicuous swelling, morning stiffness, cricoarytenoid arthritis, RA in the spine, DIP joints, and other issues.

Judging disease activity: differences between patients & doctors

hanging in thereWe have also specifically addressed the well-documented disparity that exists between the way that rheumatologists judge Rheumatoid Disease and the way patients do as in Determinants of discordance in patients’ and physicians’ rating of rheumatoid arthritis disease activity, Arthritis Care & Research. We’ve discussed the well-established fact that doctors consistently underestimate disease activity in comparison to patient ratings, and the work of Dr. Ethan Basch showing that doctors tend to downgrade symptoms in cancer patients as well.

Over two years ago, I explained that the difference in the ways doctors view swelling is one key to understanding the disparity in disease activity assessment with Rheumatoid Arthritis.

New RA assessment disparity study contrasts pain and swelling

In a new study using tools for global disease assessment, Dr. Daniel Aletaha of Medical University Vienna in Austria found that patients relied most heavily on “pain” to assess disease activity while clinicians relied on “swelling,” Discrepancies between patients and physicians in the perception of rheumatoid arthritis disease activity, Arthritis & Rheumatism.

If you’ve been following this blog very long, you may wonder why that is news. But it is! This study clearly documents a problem we’ve discussed here for years: to many rheumatologists, swelling is the preferred indicator of disease activity in spite of the low level of correlation between disease activity and conspicuous swelling. Three-fourths of about 1500 patients we surveyed last year on this site experienced a lack of correlation between swelling and documented joint damage (study by Rheumatoid Patient Foundation).

Aletaha acknowledged “Many times there is a discrepancy between patients’ and doctors’ views of disease activity, with doctors providing a better rating than the patients,” Doctors and Rheumatoid Arthritis Patients Differ on Perception of Disease Activity, Wiley press release. Aletaha concludes, “Understanding the reasons for a discordant view of disease activity needs to be recognized to allow a shared decision making in management of RA.” This could be very good news for patients as long as future efforts to “resolve the discrepancy” do not include more nonsense about excusing Rheumatoid symptoms with one so-called syndrome or other or the use of anti-depressants.

Key: Inadequate constructs oversimplify Rheumatoid Disease activity

The study did not examine what is meant by “pain” or “swelling.” Definitions are a crucial part of the problem. Patients and rheumatologists do not agree about what is swollen. And there is more to a patient’s experience of disease activity than swelling and pain, such as function. When a patient considers that a joint is affected by RA, she may consider several sensations through which she recognizes disease activity. In addition to the blanket term “pain,” her experience could include tenderness, weakness, grinding, clicking, popping, puffiness, sharp stabbing pains, drifting, twisting, pulling, redness, bulging veins, dislocation, aching, bursitis, numbness, stiffness, loss of dexterity or other functional problems, sensation of ripping detaching. Most of these could only be observed by the patient herself and might be part of the umbrella term “pain.” If a clinician is interested in knowing about disease activity in a particular joint, he must hear from the patient who is unfortunately keenly aware of disease activity.

Two ways to improve patient care immediately

Commenting on the study, Dr. Cliff Bingham, MD of Johns Hopkins told Medscape Medical News, “We need to be sure that we are addressing pain in this disease,” Patients Rate RA Disease Activity Worse Than Physicians Do. 1) Treating pain is one necessary aspect of treating Rheumatoid Disease that is neglected by too many rheumatologists. 2) Recognizing the actual scope of disease activity and the lack of correlation to conspicuous swelling would also go very far toward improving rheumatology care with its goal of “tight control” of the disease.

Postblog: Referring to the perceived symptoms of Rheumatoid Disease as “just pain” is an erroneous concept showing little awareness of RA disease activity and even less compassion for fellow human beings. For people living with the disease, disease activity amounts to more than joint activity. But joint activity itself amounts to more than swelling or pain. Fortunately, this new study once again brings the topic of disparity to the forefront.

If you’re interested in improving rheumatology care, please also read: The 10 Fundamentals of Care for Rheumatoid Patients, with printable list.

Recommended reading

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Kelly Young. All rights reserved.

This entry was posted on Friday, August 3rd, 2012 at 4:55 am and is filed under RA Research, Resources, and Rheumatology. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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