Improving Treat-to-Target by Incorporating the Patient Perspective

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Treat-to-target, or T2T, is a strategy recommended by the American College of Rheumatology (ACR) for people with rheumatoid arthritis (RA). Using this approach, patients and their rheumatologists agree on whether they should aim for disease remission or low disease activity, and then create a specific treatment plan to reach this goal. Despite proven benefits and widespread endorsement of T2T strategies, studies have shown that fewer than 50% of patients with moderate to high RA symptoms follow a T2T strategy.

Liana Fraenkel, MD, MPH, a rheumatologist with Berkshire Medical Center in Pittsfield, Massachusetts, and recipient of the Foundation’s Innovative Research Award, suspected that one of the reasons T2T strategies are underused in clinical practice is that patients may think about treatment for RA differently than rheumatologists. She therefore conducted a study to better understand how patients think about treatment for RA and how they make decisions, and then to create interventions to bridge the gaps between the way rheumatologists think and the way patients think.

The study team used the Mental Models Approach to Risk Communication for their study. “The mental models approach was originally developed to improve communication to the lay public about environmental risks,” Dr. Fraenkel said. “This approach allows researchers to recognize where different groups agree and where they differ. Using the data, researchers can then pinpoint key discrepancies—in our case, between rheumatologists and patients—and design communication strategies to specifically address patients’ concerns most likely to improve uptake of T2T strategies.”

The research team conducted in-depth interviews with rheumatologists and RA patients and a large-scale survey with RA patients to identify which issues most commonly lead patients to be hesitant about starting new medications.

The research team made several observations about the rheumatologist’s and patients’ mental models. While patients recognize the critical importance of disease-modifying antirheumatic drugs (DMARDs like methotrexate and others) in RA treatment, they find it difficult to initiate or change medications because of the uncertainty regarding whether or not they will benefit and whether they will develop any new side effects. “For patients, changing medication is a difficult decision involving important trade-offs and careful consideration of the potential benefits and risks,” Dr. Fraenkel said. “For example, they may think, ‘How much better will this medication work for me? Is it worth stopping a medication that may not be working perfectly, but that isn’t giving me any side effects?’ or ‘Is it worth getting worse while I wait for a new medication to kick in?’”

Patients appreciate learning about the medical facts from their rheumatologists, but many also want to learn from their peers about how patients actually feel on specific medications, before being ready to start a new DMARD.

Not surprisingly, while T2T strategies should ideally be based on patient specific preferences and goals, insurance barriers can negatively affect treatment decisions and access to medications.

The project’s next phase is the development of a series of videos that directly address patient concerns and help them make informed decisions. Providing patients with a set of patient narratives purposefully developed to fill a needed gap and enable patients to effectively engage in shared decision making to escalate care.

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