As a person living with rheumatoid arthritis (RA), I’ve had to make dozens — possibly hundreds — of decisions related to my health care over the years. And for those of us with a chronic illness, there is no end in sight.
As we patients work with our health care providers to get the best outcome possible over time, the ongoing decisions we face include what medications to start and stop, what foods to eat or avoid, what complementary treatments to try, and even what recreational activities are safe or beneficial to engage in. And of course, let’s not forget the periodic need to add or switch health care providers to our treatment team.
Driving the need for ongoing decision making is the widely recommended “treat-to-target” (TTT) strategy, where arthritis treatment is changed if improvement goals are not met or symptoms worsen. While it’s great that there is an ever-growing number of medications out there (including biosimilars and JAK inhibitors), more options also make the decision process more complex as you seek to understand the advantages and disadvantages of each.
And that of course assumes you even know the pros and cons in the first place. So much is still unknown or poorly understood about RA, including: What is causing or triggering the disease? Is one medication more likely to be effective in my particular situation? Good quality evidence is especially lacking or conflicting regarding diet. Want to know if coffee triggers RA, or if it’s just the fatigue from RA that causes you to drink more coffee? Nobody knows. Not surprisingly, many patients look for advice online, but the information we find can be anecdotal or misleading.
And then there’s the matter of what you’re willing to try and tolerate. Some people don’t mind injections; others will do a lot to avoid them. My personal nemesis is nausea, but some people can manage to ignore it and get on with their day. And of course, some are very concerned about even the slightest possibility of serious medication side effects like pneumonia or cancer.
What Is Shared Decision Making?
It is precisely this kind of situation — where there are many options without a clear best choice, and people differ in what they will tolerate — that is ripe for an approach called shared decision making (SDM). Using this method, your doctor describes known benefits and risks of the options, you express your preferences, and together you decide on a path forward. Research has shown that shared decision making can improve patient satisfaction, enhance patient confidence in their decisions, strengthen a sense of trust between doctor and patient, and improve health outcomes.
While shared decision making may improve how medical decisions are made, it’s not yet widely used. Both rheumatologists and patients say they struggle to get their messages across to each other. According to one recent study, about a third of adults with RA are less than satisfied with shared decision-making communication with their providers. Other studies with broader patient populations cite lower satisfaction levels. Though I wanted to participate fully in my treatment decisions right away (more correctly, I figured I was the only decider in the matter!) research shows that patients generally start out more reliant on their doctor’s advice, getting increasingly involved as they get more experienced dealing with the disease.
Another study showed how conversations about biologics between RA patients and their rheumatologists may not cover relevant details of how the medicines are administered (self-injection vs. IV, how often dosing occurs for each, and for IVs, where infusions take place). In some cases, the discussions are influenced by the provider’s incorrect assumptions about what patients know or want.
The Challenges of Using Shared Decision Making
While there is a movement afoot to increase the use and effectiveness of the shared decision making approach in rheumatology and other specialties, it faces some significant hurdles. Limited time during clinic visits is often cited as a major problem, as well as limited patient knowledge about treatments, and the need for providers to focus on documenting the visit (often with their nose in a laptop) at the expense of good communication.
One promising area in my opinion is the use of decision aids, which could help focus the limited time available to be sure patients understand the options, and help providers understand what their patients really want. See more below.
Other possibilities include having clinic staff help with patient education, as well as with navigating insurance requirements and financial assistance programs. Researchers are beginning to recognize the importance of addressing cost concerns with patients, even for those who have “good” insurance coverage.
Decision Aids to Help Shared Decision Making
Here are several decision aids you can access online; there are many others out there. Your doctor may have some in pamphlet form you can use as well.
1. RA Patient Preferences
This decision aid was designed to make it easier and faster for patients to communicate what matters to them when picking a treatment, and to match treatments to their values. (Full disclosure: I worked on this research project with CreakyJoints.) This is the full paper describing its development, but you can just skip to the graphic titled “Which group most closely matches how you think about RA medications?”
2. RA Medication Guide and Decision Aid
Designed to increase knowledge and reduce decisional conflict among vulnerable patients with moderate to severe RA. Learn more here.
3. Methotrexate Alone vs. with Biologic Decision Aid
This is for newly diagnosed patients who’ve never taken any medication for their rheumatoid arthritis before. Learn more here.
4. Enbrel Decision Aid
This is for a specific anti-TNF drug, Enbrel, but the thinking behind it could apply to other medications. Learn more here.
5. CreakyJoints Patient Guidelines
These are more comprehensive guides than decision aids, but are well organized and full of very helpful, medically correct information in one handy location. Available for a variety of conditions and situations; these do a very nice job of covering both medications and other important topics that patients wrestle with, including diet and exercise. Get them here.
The Simple Patient Tactic That Works
And there is one simple thing I’ve learned to do to make sure my concerns are addressed during my rheumatology visits: being ultra-efficient in communicating. If my list of issues is long, I start out by saying something like, “I’ve got seven things I want to go over, but I think we can get through the list in the time we have.”
Then I cover them in descending priority order, working from either a written list or a list on my phone. At the conclusion of the visit, I quickly recap the action items to make sure we are in sync. This has helped me to proactively seek help with issues that otherwise would not have been discussed if I left things up to my doctor (vaccinations, heart health screening, physical therapy, to name a few), without making the visit any longer than scheduled.
One way or the other, we end up making decisions. But of course, that is just the first step. Barriers can and do come up, even assuming you’ve found a way to afford and access your medications. For example, a while back, I brought up the subject of the new shingles vaccine with my rheumatologist. He told me to follow up with my primary care provider to get it. At first, I stalled because I was waiting to see if there might be any evidence out there about effectiveness and safety in immunosuppressed patients (there wasn’t). Then I just decided to go for it, but discovered there is a shortage of the vaccine in my area. I’ve been on a waiting list for several months now at my local pharmacy.
There’s a long way to go in adopting and benefiting from shared decision making, but at least there is momentum in the right direction. As patients, we can let our providers know that we want to discuss ALL of our concerns about our health and treatment — including medication, diet, exercise, vaccinations, and quality of life issues — using any available tools to expedite the process. Odds are good that our doctors will welcome the conversation, and that our health will improve as a result. (If your doctor doesn’t welcome the conversation, that could be a sign to consider a new rheumatologist.)