Telling a patient that they have rheumatoid arthritis (RA) or any other autoimmune disorder is never easy. By the time most patients arrive in our office, they know, of course, that something is wrong. They have likely been through some diagnostic testing and have been symptomatic for months or even years. Often, they have been bounced around from provider to provider without getting any answers.
Consequently, the first thing I tell all new patients who come to our office feeling frustrated and defeated is that rheumatology is like a jigsaw puzzle—the lab results are one piece, physical symptoms are another, radiology results are another, as are family and medical history. Our job is to take all of those pieces and put them together into a
whole picture to figure out what the problem is. We then work with our patients to come up with the best plan to address that problem.
That first conversation I typically have after the picture has come together and shows that a patient has a chronic and potentially debilitating disease that will most likely
require lifelong treatment is a toughie. I think I sometimes unintentionally go into autopilot mode when having this conversation, telling a patient that, “Your results are consistent with rheumatoid arthritis, an autoimmune connective tissue disease.” That probably isn’t the most useful approach. I mean, if I’m a patient, would that phrase even make sense?
It’s worth taking a second to put yourself in your patient’s shoes, or at least your own shoes back when you were a nurse who was new to rheumatology (unless you are new to rheumatology right now, in which case you can leave your shoes on).
Explaining to patients what an autoimmune disease is can certainly be a challenge. Some people may tell patients that it’s a case of the immune system attacking itself, though I feel that “attack” is a scary word for our patients.
Consequently, I usually break it down and try to explain in simple terms what the immune system does—it fights off viruses, bacteria, and other “bad guys” in our body. I tell them that, for reasons we don’t fully understand, the immune system gets confused in patients with RA, and instead of focusing solely on fighting off the bad guys, it targets some of the good guys as well. That basic building block then allows me to go into more detail with some patients without overwhelming them right from the start. Sometimes, talking about the immune system in detail is still overwhelming for me!
Once we discuss the diagnosis, the first questions I get from many patients are along the lines of, “Will I be crippled? Will I end up in a wheelchair? Will I still be able to work? How will I take care of my family?” While it’s impossible to predict the disease course in any individual patient, the good news is that I can tell my patients that we have come a LONG way in the treatment of RA in the last 15 years. While it is important to let our patients know that there is no cure for RA, we can at least assure them that, with proper treatment and regular monitoring, disease remission is possible and will always be our goal.
A few more good baseline recommendations for newly-diagnosed RA patients:
1. Emphasize physical activity
I shy away from the word “exercise” because I find it to be intimidating for people in chronic pain (can you imagine being told you need to exercise 150 minutes per week when every second is painful?). Instead, I focus on encouraging any physical movement that the patient is comfortable with. This can include stretching, walking, or yoga. I also make sure to emphasize the anti-inflammatory effects of physical movement in RA patients. This is important as many patients believe that anything they do that hurts is causing more damage to their joints. I have seen many patients give up on physical activity for this very reason.
2. Speak positively about all treatment options and not just biologics
While it’s true that the introduction of biologic therapies has been the biggest driver of our patients’ improvements in the last 15 years, there is still plenty of evidence that traditional disease modifying anti-rheumatic drugs can help for a significant period of time. I have noticed an increasing public stigma regarding methotrexate (MTX) in recent years. For some reason, patients are more and more fearful of the side effects they have heard are associated with MTX, even though most are uncommon and typically reversible. In our practice, we have a patient handout for every medication used to treat RA that gives a basic overview of the drug, what it is used for, how it works, as well as possible side effects. I find it’s also helpful to tell patients which side effects I have seen most frequently and which ones I have never come across in my 15 years of practice.
3. Don’t ignore the “small print”
Think about the last medication advertisement you saw on television. You probably remember seeing someone dancing, laughing, and living a normal life (or perhaps they were in a rooftop bathtub with their significant other—I guess it depends what the ad was for!). Regardless, what many of our patients remember is the end of the ad when there was a 10-second list of all of the SCARY potential side effects associated with the medication. Some of them can be quite alarming. My role in our newly-diagnosed RA patients, who almost always have seen some direct-to-patient advertisements for multiple biologic agents and small molecules, is tobreak things down into digestible chunks of information. As with nonbiologics, I make sure to give them honest feedback regarding which side effects I have and have not seen in my career. I am also careful to avoid saying that biologics and small molecules “suppress” the immune system; instead, I say that they “alter” the immune system. That way, patients don’t think their immune system has completely shut down and that they will catch every virus that comes along. I also stress the importance of calling me if they are prescribed an antibiotic for any reason after starting a biologic or small molecule, or if they have any sign of infection.
Sometimes, our choice of wording makes all the difference in helping us get important points across to our patients without unnecessarily stirring up fear. I have found that whenever I hand a patient a packet of information on a medication, no matter how many other words are there, the first one they will see is “cancer.” And it’s totally understandable—we all know people who have been affected by a cancer diagnosis.
Put yourself in the shoes of your patient—“Why are you recommending a medication to me that increases my risk of getting cancer?”
Here is how I break this down. I first tell patients that hundreds of studies have been performed and that there is no increased risk of developing cancer in patients treated with biologic therapies compared to those treated with nonbiologics.1 I then explain the many risks of nontreatment of their RA vs. treatment. Nontreatment can lead to irreversible damage to the joints and other vital organs. Finally, I make sure to emphasize that our current RA medications do more than just alleviate joint pain; they also help decrease the risk for a bunch of other nasty comorbidities.
The rheumatology nurse as a patient educator is one of our most important roles and should not be taken lightly. When a patient is diagnosed with a chronic disease such as RA, they may feel hopeless and scared, but with proper education and support, we can help them become empowered with the right attitude to be able to tackle the disease.
Carrie Beach BSN, RN-BC, is a rheumatology nurse with the Columbus Arthritis Center in Columbus, OH, and the current Historian for the Rheumatology Nurses Society.
1. Wadström H, Frisell T, Askling J; Anti-Rheumatic Therapy in Sweden (ARTIS) Study Group. Malignant neoplasms in patients with rheumatoid arthritis treated with tumor necrosis factor inhibitors, tocilizumab, abatacept, or rituximab in clinical practice: A nationwide cohort study from Sweden. JAMA Intern Med. 2017;177(11):1605-1612.