How Helping to Create the Latest American College of Rheumatology Rheumatoid Arthritis Treatment Guidelines Gave One Patient ‘Faith in the Process’

When you live with a chronic illness like rheumatoid arthritis, you may find yourself questioning every step of your treatment process. And it’s understandable. After all, treating rheumatoid arthritis (RA), where there are many symptoms to address and many different kinds of medications to address them, isn’t the same as treating, say, strep throat, where there is a specific issue with a singular solution. Not to mention the course of a chronic disease like arthritis can vary from person to person; no two patients have the same symptoms, comorbidities, treatment responses, or treatment preferences. It’s natural to wonder how your doctor decides what treatments to recommend to you. And the answer is more interesting and nuanced than you might realize.

Every five years the American College of Rheumatology (ACR) releases an updated set of treatment guidelines for various rheumatic diseases (such as ankylosing spondylitis, osteoarthritis, and gout. Most recently, the ACR released an update to its rheumatoid arthritis guidelines, called the 2021 American College of Rheumatology Guideline for the Treatment of Rheumatoid Arthritis.

The updated treatment guidelines, which focus only on medication therapies (future guidelines will address “non-pharmacologic” approaches), reaffirm the disease-modifying antirheumatic drug (DMARD) methotrexate should be used as the first-line treatment for RA and suggest avoiding glucocorticoids (corticosteroids, or steroids) as much as possible. Read more about the main updates to the guidelines here.

Although the guidelines are rooted in the latest scientific research, they also incorporate the experiences, perspectives, and preferences of patients living with RA. The panel that oversaw the update of the treatment guidelines consisted of 13 leading rheumatologists and two patient representatives, whose role it is to convey the thoughts of the greater patient community to the rheumatologists and ensure this perspective is incorporated into the guideline.

“With the guidelines, you’re being led by science and patient preferences,” says Shilpa Venkatachalam, PhD, MPH, Associate Director of Patient-Centered Research at the Global Healthy Living Foundation. Dr. Venkatachalam, who has rheumatoid arthritis, served as one of the patient representatives on the panel that created the 2021 ACR rheumatoid arthritis treatment guidelines.

As a researcher who specializes in studying patient-reported outcomes in chronic disease, Dr. Venkatachalam has a different understanding of rheumatic diseases and treatments than other patients. But the minute she steps into her rheumatologist’s office and sits on the observation table, that knowledge is washed away by worry about her own condition and how to manage it.

“I hear things like ‘it’s trial and error. We don’t know what’s going to work for each person.’ As a patient, that makes me nervous,” says Dr. Venkatachalam. “You’re just hoping your doctor is making the right decisions for you as an individual and not just treating you like any other patient.”

“When I heard all the clinicians [on the panel] acknowledge that all patients are different and talk about treatment as it pertains to each patient, that instilled a lot of faith for me in the entire process,” says Dr. Venkatachalam. “It made me realize doctors aren’t just pulling treatment plans out of the air. They are thinking very carefully through every step of the treatment with the best interests of the patient in mind.”

To add to Dr. Venkatachalam’s confidence, updating the guidelines takes time — in this case, it took two years from start to finish.

The process begins with a committee of researchers who review and sort through all the available information from various studies on treatment for the rheumatic disease. This includes research on effectiveness, side effects, dosage, tapering, effects of comorbidities, research that compares different therapies to each other, and much more. They compile this information and present it to the clinician panel, as well as the patient panel. This allows both panels to make the most informed data-based decisions. The patient panel, however, has the added responsibility of discussing their experience with certain treatments. They talk about what makes them comfortable starting a treatment, what factors might prevent them from trying or sticking with a certain treatment, the side effects they find most bothersome, and their desired outcomes from treatment.

These patient preferences are important to consider because implementing them in the guidelines can “improve adherence to treatment and increase success in disease management,” says Dr. Venkatachalam says.

“We go through the data as well as patient preferences and try to marry them together to form a cohesive set of guidelines that keep in mind the best interest of the patient, while also acknowledging and addressing patients’ concerns,” says Dr. Venkatachalam.

The committee evaluates each recommendation — say, which medication should be recommended first for someone with moderate to severe RA who has not started any disease-modifying treatment yet — through a voting process. A recommendation is presented, and each committee member first votes on whether they are for or against it. If they are for the recommendation, they must also vote on whether it’s a strong or conditional recommendation.

• A strong recommendation is one in which the panel is highly confident that the benefits of the recommendation outweighs the risks for the majority of patients, based on moderate or high levels of evidence.
• A conditional recommendation is one in which the panel is less confident that the benefit of these recommendation outweighs the risk, due to low certainty in the supporting evidence or because of substantial variation in patient preferences.

A recommendation’s status is determined by a majority vote from the panel. If this is not achieved on the first vote, then the panel discusses the data and patient preferences surrounding the recommendation.

“The panel goes through every detail to reach a decision that is best for the patients,” says Dr. Venkatachalam. “It was really uplifting to see the doctors aren’t just relying on data.

They are sharing their own patients’ stories too, hoping their experience and preference may impact the guidelines.”

The voting process continues until a majority is reached for all recommendations. Any recommendation that receives a majority vote against it is not added to the guidelines. Any recommendation that gets a conditional vote is added to the guidelines, along with an explanation as to why it was deemed conditional, as that extra information may be relevant to doctors and patients.

“Seeing in the guidelines that a treatment is considered conditional because of a patient experience that is similar to your own can provide even further guidance,” Dr. Venkatachalam says.

For example, one conditional recommendation in the 2021 guidelines says that RA patients with moderate to high disease activity who have not started any treatment yet should take methotrexate by itself rather than pairing it with a TNF inhibitor biologic. Part of the reason the recommendation is conditional is “because some patients, especially those with poor prognostic factors, may prioritize more rapid onset of action and greater chance of improvement associated with combination therapy over the additional risks and costs associated with initial use of methotrexate in combination with a TNF inhibitor.”

There are many such examples throughout the guideline of how patient preferences affect treatment decisions.

Given the amount of patient involvement, as well as the patient experience that is considered during the process, Dr. Venkatachalam feels the RA treatment guideline is as beneficial to patients as they are for the doctors.

“Being aware of the ACR guidelines gives patients more information, allowing them to be more informed and involved in the shared decision-making process,” she says.

Treatment guidelines don’t necessarily eliminate the trial-and-error process that comes with treating a rheumatic disease and can cause concern among patients. But they should reassure patients that the journey to finding a treatment plan that works isn’t just random experimentation; it is supported by research that not only considers data from clinical trials and real-world studies, but the lived experiences of other patients like you.

“Rheumatology is a lot of detective work, and that won’t change any time soon. But knowing what goes into creating the guidelines made me have a lot of faith and trust in what doctors recommend and why they recommend what they do,” says Dr. Venkatachalam. “There’s actually a method to the apparent madness.”

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