How do you make decisions about treatment?
Think about the last conversation you had with your doctor about starting a new medication or adjusting your dose. What information helped you reach a decision? How did you weigh the benefits and risks?
These are crucial questions for which the answers are poorly understood. For some medication decisions, there is strong evidence from research that can help guide you and your doctor (see my related post). To stay current with best practices based on good evidence, your doctor may refer to treatment guidelines from the American College of Rheumatology. Treatment guidelines are developed by looking at all available evidence from the highest quality research to make “strong” or “conditional” recommendations about the best medication regimen for a condition like rheumatoid arthritis (RA).
Great! So RA treatment decisions should be easy, right? It’s not always that simple, unfortunately. The reality is that even if you follow the guidelines, there are still hard choices that need to be made. For example, if you are not doing well on a specific medication, the guidelines almost always tell doctors that they have a choice between several different drugs. In cases like these, the best recommendation is for you and your doctor to determine which medication is best for you (5-6). When faced with these decisions, patients often want to know how other people like them choose. We are currently doing a study which will allow us to give patients exactly that kind of information.
Here’s how CreakyJoints is helping other patients, your doctor and you
Your experience may be different (and I hope it is), but many patients I talk to do not feel they are really part of the decision making process. It’s frustrating to note that many doctors rarely involve patients in decision making despite the numerous educational pamphlets and web-based tools that have been created to support it (7).
This is not unique to rheumatology—in fact the only good proof we have that shared decision making works is in elective surgery and prostate cancer screening (8). However, new research can help improve shared decision making for RA. With support from the Rheumatology Research Foundation, CreakyJoints is working with Dr. Liana Fraenkel, a rheumatologist at Yale University, to ask RA patients about their preferences.
Thanks to the input of more than 1,000 people in the CreakyJoints community, we will be able to develop materials that will assist patients and their doctors figure out which medication they would be most comfortable moving ahead with. If you are an adult with RA, you probably received an email about this survey opportunity within the past two months. Thank you to everyone who participated and helped us obtain a sufficiently large sample size. Doctors will only become better decision making partners once they understand how you think about the benefits and risks of treatment.
Looking for more ways to get involved in research? Check out www.ArthritisPower.org.
(1) Harrold LR, Harrington JT, Curtis JR, Furst DE, Bentley MJ, Shan Y, et al. Prescribing practices in a US cohort of rheumatoid arthritis patients before and after publication of the American College of Rheumatology treatment recommendations. Arthritis & Rheumatism. 2012;64(3):630-8.
(2) Schmajuk G, Schneeweiss S, Katz JN, Weinblatt ME, Setoguchi S, Avorn J, et al. Treatment of older adult patients diagnosed with rheumatoid arthritis: improved but not optimal. Arthritis & Rheumatism. 2007;57(6):928-34.
(3) Schmajuk G, Trivedi AN, Solomon DH, Yelin E, Trupin L, Chakravarty EF, et al. Receipt of Disease-Modifying Antirheumatic Drugs Among Patients With Rheumatoid Arthritis in Medicare Managed Care Plans. JAMA: The Journal of the American Medical Association. 2011;305(5):480-6.
(4) Schoels M, Aletaha D, Smolen JS, Bijlsma JWJ, Burmester G, Breedveld FC, et al. Follow-up standards and treatment targets in rheumatoid arthritis: results of a questionnaire at the EULAR 2008. Annals of the Rheumatic Diseases. 2010;69(3):575-8.
(6) State Legislation.
(7) Oshima Lee E, Emanuel EJ. Shared decision making to improve care and reduce costs. N Engl J Med. 2013;368(1):6-8.
(8) Stacey D, Legare F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:Cd001431.