Where the Rubber Meets the Road or What If Only the Cancer in Dave’s Kidneys Was Treated?

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Measuring disease activity: where rubber meets the road

Recently a rheumatologist friend told me of needing to prove ACR20 (a measure of 20 percent improvement) in order for a patient to continue receiving a biologic treatment. I don’t know whether it was private or government insurance, but something bothered me about it.

Of course, 20 percent improvement (ACR20) is not very dramatic. A person in industry once asked me, “Would your life be much better if we could treat four of your twenty inflamed joints?”

In this case, what concerned me was something else. ACR20 (supposedly reserved for clinical trials) measures improvement of musculoskeletal symptoms. The same is true for all six of ACR’s recently recommended measures of disease activity: CDAI, DAS28 (with ESR or CRP), PAS, PAS-II, RAPID-3, and SDAI. (ESR and CRP may provide systemic signs in some patients; and a patient “global assessment” is a small part of each formula, but generally stated in terms of “your arthritis.”)

Measuring beyond synovitis? And beyond joints?

Attention is not given to symptoms beyond joints – or often beyond synovitis (inflamed synovial tissue). What if a person’s joint symptoms did not improve enough, but his lung symptoms did? I know a person like this whose rheumatoid lung disease was brought under control by methotrexate, while joint symptoms continued. Of course the opposite scenario is equally troublesome, and probably more common: a person’s synovitis improving, with little or no attention paid to non-articular aspects of the disease.

Some patients receive medical attention for extra-articular (outside of joint) symptoms of rheumatoid disease and many do not. Either way, I’ve never heard of including them in a measure of disease activity. And that makes sense because those symptoms are not tracked or treated by rheumatologists. Rheumatologists are trained to identify and evaluate rheumatic diseases by musculoskeletal symptoms (although there are often discrepancies there as well).

Sandy_Blue_on_Mayo_blog

So-called “arthritis” in the eyes

Last year, I read the story of Sandy Blue on Mayo Clinic’s blog. Of course it’s impossible to have joint inflammation (“arthritis”) in the eyes since there are no joints in the eyes. Sandy saw eight eye specialists over six months before finally traveling to Mayo Clinic where a “team approach” allowed her to be diagnosed with Rheumatoid Arthritis. Sandy’s first apparent symptom of RA was her scleritis, which inflamed her eyes so badly she could not see.

Not an aberration

It’s not uncommon for the first or the worst symptoms of Rheumatoid disease to be extra-articular. I’ll never forget the first time (in 2009) I asked people about their very first rheumatoid symptoms. Or the wide variety of responses such as Andrew’s:

“My first symptoms were iritis (inflammation) in eyes, then ankle problems (torn Achilles tendons resulting in surgery on both sides). Not until extreme fatigue hit me last year coupled with finger swelling and pain did I get diagnosed with RA and start on treatment. While my symptoms did eventually spread to all fingers, wrists, elbows, and knees (my latest big battle), it all started with ‘non typical’ RA symptoms that didn’t meet the traditional RA patterns.”

If you work in the healthcare industry, especially if you’re a clinician who treats people with Rheumatoid, I hope you’ll take advantage of the 558 comments on that article. While it would be impossible to determine a frequency of occurrence of each initial symptom, the list does reflect the wide range of symptoms that patients report. I’m not sure I’ve met a patient who experiences only synovitis, but my guess is they are rare.

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Can a lack of comprehensive grasp of RA harm patients?

If you’re a caregiver or patient, questions or difficulties you’ve encountered in treating this disease are usually related to this problem – including a need for more effective drugs. How can drug developers find solutions when the problem is so ill defined? Does it matter if symptoms related to the disease are not recorded in the chart of the rheumatologist? In more ways than I can count in one post.

What if they’d only treated the kidneys in Dave’s stage IV renal cell carcinoma?

The change that patients need

We need healthcare professionals to have a clearer more complete understanding of this disease.
We need more suitable measurement tools and diagnostic criteria.
We need medical care that is more comprehensive in its approach.
We obviously need a better name for a disease that’s not “a type of arthritis.”

Of course, adding the patient voice is the way to improve care AND research related to Rheumatoid disease. Whether you’re a patient or provide any kind of care or benefit to Rheumatoid patients, I hope you’ll stand with patients by joining the Rheumatoid Patient Foundation.

Strongly recommended reading

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Kelly Young. All rights reserved.

This entry was posted on Monday, March 11th, 2013 at 12:50 pm and is filed under Reality Check. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

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