Understanding the reality of the disease is only half the battle
We are making progress. Although there’s still a long way to go, patients are playing a part of advancements toward more complete understanding of Rheumatoid Arthritis as a disease. We might suppose that once RA is more widely understood to be a systemic disease, it will be treated as such with various needs of patients (some listed below) being addressed.
At that point, we might think things will promptly fall into place. But we’d be wrong if we assumed that.
We will accomplish these goals, and the new Rheumatoid Patient Foundation will work to achieve them. However, improving medical care depends on other factors beside patients’ needs being known. E-patient Dave’s post (with cool slide show) shows one reason that information might not always be enough to create change.
Study shows patients with more active RA receive less adequate care
Look what investigators found recently regarding whether the 2008 American College of Rheumatology (ACR) treatment recommendations for RA made a difference: “Publication of the recommendations did not significantly change treatment patterns for those with active disease… Substantial numbers of RA patients with active disease did not receive care consistent with the current ACR treatment recommendations. Innovative approaches to improve care are necessary” (Prescribing practices in a US cohort of rheumatoid arthritis patients before and after publication of the American College of Rheumatology treatment recommendations).
But there’s more. The study of 1632 U.S. patients also found that the care was more consistent with recommendations in patients with low disease activity. In each group, it was the patients with poor prognosis indicators who were not receiving care consistent with recommendations.
I was stunned when I read Medscape writer Janis Kelly’s description of why: “They suggest that a contributing factor might be lack of awareness of the patient’s disease activity at the time of the visit” (RA Treatment Still Lagging Behind ACR Recommendations). Stunned only because this is something I’ve written and said so many times. Yes, problems in RA treatment are becoming apparent, even to the medical community.
New 2012 RA treatment recommendations may not take effect for years
Finally, this month, the ACR updated those 2008 recommendations for treatment of RA with DMARDs and Biologics. It seems more comprehensive and more aggressive, a good step. Yet, we have to ask how much it will help patients since “more than half of patients with RA who have moderately or highly active disease still do not receive care consistent with the guidelines, mostly because they are undertreated” and treatment recommendations tend to “typically require 17 years to affect routine patient care” (Medscape).
Some needs of RA patients
- Monitoring and treatment even for non-joint aspects of the disease (Comprehensive RA care)
- Extensive range of therapies to preserve use of joints.
- Broad information about the disease and treatments for newly diagnosed patients
- Better accommodations to keep people working as long as possible
- More research leading to better treatments and a cure
- Improved access to disability assistance
- What about a Clinical Protocol for Rheumatoid Arthritis Disease?
- Can We Treat the Whole Person or at Least the Whole Disease?
- Do you have a Rheumatology Care Team?