TTT challenges patients, too
Rheumatologists are not the only ones reluctant to embrace TTT. It challenges patients as well, in a number of ways.
“Patients have to be willing to change treatments as often as you need them to, and that can be every 3-6 months, or even more quickly,” Dr. Curtis said. “The cost can be a factor. And a lot of patients are risk averse. They feel there may be more of a downside to switching than a benefit to be gained, especially if they’ve had RA for a while. Maybe they’re feeling a lot better than they were; their disease is still active, but they don’t feel bad enough to want to change medications.”
Researchers have explored these questions.
Last year, Dr. Michaud published a survey of 48 RA patients who were interviewed about their experiences with DMARDs and the feelings that would prompt them to comply with a treatment regimen – or resist one (Arthritis Care Res. 2017 June 2. doi: 10.1002/acr.23301).
“For patients’ motivations to accept treatment regimens, two themes emerged,” said Dr. Michaud, who is also codirector of the National Data Bank for Rheumatic Diseases. “One, the desire to return to a ‘normal’ life and, two, the fear of future disability due to RA. For motivations to resist treatment regimens, five themes emerged: fear of medications, maintaining control over health, denial of sick identity, disappointment with treatment, and feeling overwhelmed by the cognitive burden of deciding.”
The findings confirm one of TTT’s core tenets: involving patients in treatment decisions, Dr. Michaud said in an interview. “A lot of patients in my studies have reached a place of ‘OK-ness’ with their RA. The don’t want to change what they feel is working. They’re afraid of getting worse because they’ve been there and know what that can be.”
Rapid change-ups to new medications are especially intimidating to long-term patients, he said. “This is a very important aspect of resistance to change. The side effects of these medications, both major and minor, are not something that people want to experience.”
Dr. Liana Fraenkel
“As a physician, I’m worried about the rare and extremely rare adverse events – things that are really dreaded, that can be fatal. However, these happen in only a couple out of tens of thousands of patients. On the other hand, there are common side effects that occur in up to 20% of our patients. They’re not a serious threat to health, but they impact quality of life every day with nausea, dizziness, diarrhea, headache, and brain fog. As rheumatologists, we really undervalue these, and guess what? When we ask patients, it turns out that nausea and dizziness and diarrhea are not things that they want in their daily lives.”
Dr. Fraenkel of Yale University, New Haven, Conn., explored this topic in a recently published survey of 1,273 RA patients that sought their concerns about taking triple therapy, biologics, and Janus kinase inhibitors (Ann Rheum Dis. 2017 Dec 15. doi: 10.1136/annrheumdis-2017-212407). The survey included seven medication attributes – administration, onset, bothersome side effects, serious infection, very rare side effects, amount of information, and cost – and sought to determine the relative effect of each attribute on patient preference for different treatment options.
“We found five distinct clusters” of patients, Dr. Fraenkel said in an interview. “I will admit I was surprised when I saw the largest group (38%) was most concerned about the cost of their medications. Our assumption is always that the rare and dreaded side effects are the most concerning, but for these patients, cost was the dominant issue. It’s the No. 1 reason patients are noncompliant with their initial treatment recommendations. And with the cost of our biologics, it is a very big deal.”
Her reaction pinpoints an important obstacle in shared decision making: physician bias. “I’d say the vast majority of us argue that the benefit of TTT outweighs the harms. We minimize inflammation, so patients will live longer with less disease impact. But how we get there should be up to the patient. My biases shouldn’t come into play. The decision to intensify is different than the decision about how to intensify. This is where the back-and-forth comes in, making sure the patient understands the pros and cons of escalating or not. If she decided no, she doesn’t incur the risk of a new medication, but she does incur the risk of progressing. The bottom line is that physicians should not bring their biases to the table but describe the facts, the importance of which will be different to different patients who have different goals.”