What about a Clinical Protocol for Rheumatoid Arthritis Disease?

This was written in October 2011 as the fourth in the Frying Pan Post series. As most of you know, I’ve been crazy-busy since then, leaving many things on hold. These posts examine crucial ideas that have surfaced over the last couple of years on the blog. The Frying Pan Posts challenge the status quo in areas that seem critical to the lives of people living with RA. I’m going to publish this one as written, but there is an important update I’ll mention first.

    UPDATE: New this week: the ACR has just published two items which could bring some progress if they are followed.

  1. 2012 Update of the 2008 American College of Rheumatology Recommendations for the Use of Disease-Modifying Antirheumatic Drugs and Biologic Agents in the Treatment of Rheumatoid Arthritis. The full document downloaded as 24 pages. We’ll discuss it further in the future, I’m sure. It updates previous guidelines in the following areas: “1) indications for DMARDs and biologic agents, 2) switching between DMARD and biologic therapies, 3) use of biologic agents in high-risk patients (those with hepatitis, congestive heart failure [CHF], and malignancy), 4) screening for TB in patients starting or currently receiving biologic agents, and 5) vaccination in patients starting or currently receiving DMARDs or biologic agents.”
  2. Rheumatoid Arthritis Disease Activity Measures: American College of Rheumatology Recommendations for Use in Clinical Practice. From the introduction: “Despite the push from various stakeholders in the health care system to standardized disease activity assessment in RA and growing evidence that treating to target is effective, most US rheumatologists do not routinely use standardized measures in clinical practice.” Six RA disease activity measures are now “recommended,” including some patient outcome measures we’ve discussed here.

Need for clear objectives for Rheumatoid patient care

Florida sunset woods
What are the goals of rheumatology care for Rheumatoid patients? What are the implications for a philosophy of treatment or a standard of care for Rheumatoid disease? Vast differences in clinical care for RA exist, as we observe every day in our community.

Some areas where a clinical protocol would make a difference for Rheumatoid patients:

  1. When to begin or modify disease treatment.
  2. When and how to monitor disease activity.
  3. When various additional specialists should be referred.
  4. Interventions or procedures to offer patients.
  5. Baseline testing of common issues associated with Rheumatoid disease.

Evidence of the fundamental need for a consistent RA protocol

  1. A large international task force on treating RA to target recommended defining treatment targets for Rheumatoid disease. “Aiming at therapeutic targets has reduced the risk of organ failure in many diseases such as diabetes or hypertension. Such targets have not been defined for rheumatoid arthritis (RA).” They make suggestions which may allow for “optimal outcomes.”
  2. On their website, the American College of Rheumatology (ACR) has published Practice Guidelines for Rheumatoid Arthritis: “The ACR has developed practice guidelines to reduce inappropriate care, minimize geographic variations in practice patterns, and enable effective use of health care resources.” In 2002, they published a pdf of clinical practice guidelines for RA which was updated in 2005.
  3. Patients frequently wonder out loud whether being treated with DMARDs for RA is sufficient if they continue to experience the same symptoms and/or additional symptoms. Often they’re mistakenly told that it is.

What Rheumatoid patients need and why

Let’s make this very simple. People living with RA want to live as long and healthy as possible, doing as much as possible. Of course, they want to be able to walk a dog or brush their hair or cut their food.

They want doctors to use testing, treatments, or procedures that could promote that. If anyone else had bursitis or a swollen knee or carpel tunnel syndrome or problems with eyes, lungs, or heart, it should be treated. People with RA should be treated too, even though the RA may be the source of the problems.

The Frying Pan Posts:

Click here to read more posts about comprehensive care. MUCH more to come.

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

5 thoughts on “What about a Clinical Protocol for Rheumatoid Arthritis Disease?

  • April 6, 2012 at 11:46 am
    Permalink

    Well so much for my planned weekend reading. You’ve given me a ton to wade through. 🙂

    I don’t know if you saw this in the latest journal of Clinical Pharmacology and Therapeutics vol 91, but I found it very educational.

    Google this: Clin Pharmacol Ther 91

    and the page should come up.

    Articles are the editorial:

    Optimizing Therapeutics: The Next Front in the War on Rheumatoid Arthritis

    And the other article is:

    Current Understanding of Rheumatoid Arthritis Therapy

    Both of these are listed as free so anyone should be able to get to them and read them.

    Best,
    RaRAP

    Reply
    • April 6, 2012 at 3:34 pm
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      Yes, I read those at least a week ago – I remember because the tabs are still saved on my Dell & I was joking with a professor friend about a bit of “pie in the sky.” We concluded that we both do like pie, anyway.
      Seriously, there are 2 important things to consider: 1) whether the recommendations contribute to the establishment of a sufficient protocol; and 2) whether the new recommendations will be actually implemented for most patients, as I hinted in the post. I hate to steal my own thunder for next week, but in the spirit of engagement, have you seen this? http://onlinelibrary.wiley.com/doi/10.1002/art.33380/abstract / http://www.medscape.com/viewarticle/759886

      Reply
  • April 7, 2012 at 3:18 am
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    I checked out all three links. Thanks for posting.:)

    Reply
  • April 7, 2012 at 12:26 pm
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    I so agree that a standard protocol should be used. I’m sure there are others out there like me that have had to go to multiple rheumatologists and multiple specialists until someone listened to what my symptoms were and actually started treating me. Its the same old seronegative story . . . so frustrating that there are still rheumatologists out there that will not treat the disease aggressively if you are seronegative. All I can do is look at the damage that’s already occurred, and feel thankful that I finally do have a doctor that is taking the disease seriously and treating me aggressively and appropriately.

    All I can say to others suffering from this disease is that if you are not getting the best treatment you think you should be getting, you have to keep looking for better doctors. I did learn how to be an advocate from you, Kelly, and thank you very much for teaching me that.

    Reply
    • April 8, 2012 at 1:49 am
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      Went through 3. I don’t have xray damage yet and I am already supposed to do mtx/humira. I fought hard to get treatment since I am seroneg, but I also thought mtx would be enough. It’s a little scary to need more. I also want to be able to function better what ever that means.

      Reply

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