With the ongoing development of biologics and other disease-modifying drugs, there’s been a sea change in the treatment of rheumatoid arthritis (RA) and other types of inflammatory arthritis over the last 15 or so years. At the same time, however, having a wide variety of treatment options can make it confusing and overwhelming for an individual with arthritis (and their doctor) to decide on the best option for them.

Selecting one treatment from among many can cause decision paralysis when you don’t know how the treatment might make you feel once you start. Plus, it can take months to know if the medication is actually having any effect on your disease.

Part of what complicates the decision-making process is that clinical trials separately report a drug’s benefits (its ability to reduce symptoms and prevent disease progression) from its side effects (such as rash, nausea, or infection).

This makes it hard for patients and doctors to know what a patient’s overall experience is likely to be on a new medication.

That’s why researchers aimed to develop a new tool, called the Global Patient-Reported Outcome Measure (or G-PROM), to quantify and compare patients’ overall experiences on medications. The measure is intended to simultaneously communicate both the likely level of symptom improvement and expected extent of side effects.

Research about the development of the tool was presented at the 2018 American College of Rheumatology/Association of Rheumatology Health Professionals (ACR/ARHP) Annual Meeting in Chicago.

“Based on their goals, a patient might be more willing to risk certain adverse events they consider ‘mild’ if it means they can achieve their treatment target,” says study coauthor Liana Fraenkel, MD, MPH, professor of rheumatology at Yale School of Medicine and section chief of rheumatology at the VA Connecticut Healthcare System. “But, currently, there is no existing resource to help people with rheumatoid arthritis and their doctors weigh the potential desirability of one medication compared to many other treatment options.”

How the Tool Works

First, study authors, including those from our nonprofit organization the Global Healthy Living Foundation, surveyed 195 rheumatoid arthritis patients through our ArthritisPower research registry. They compared adverse events (side effects) as worse, better, or no worse, or no better than a referent adverse event. For example, patients could indicate that they considered having a headache an equivalent side effect to having fatigue, but that stomach pain was worse than having a headache.

These data then allowed researchers to create groups of adverse events that have been evaluated by RA patients as having a comparable effect on quality of life.

Then study authors ran a second survey of 426 ArthritisPower participants, who were asked to give their preference for pairs of outcomes. Each outcome included a combination of benefit (for example, “some improvement”) and an adverse event (for example, “moderate adverse event”).

Participants’ ratings generated different levels of outcome combinations. A lower level might include drugs where patients have major symptom improvement along with no or mild adverse events. A higher level might include drugs where patients have the opposite outcome: little or no symptom improvement along with serious adverse events.

The goal of the tool, once it gets validated, is to classify different drugs so patients could better understand the simultaneous risks and benefits of taking any given drug. Your doctor might be able to tell you that Drug A is a low-level drug, for example, but Drug B is a higher-level drug.

“Right now, some patients make decisions about which drugs to take based on informal consultation with fellow patients: ‘Have you ever taken Drug A? What was it like?’” says W. Benjamin Nowell, PhD, director of Patient-Centered Research at the Global Healthy Living Foundation. “This tool provides a way to formalize the information shared among patients and, ultimately, to support both patients and doctors in making decisions with the benefit of collective input from many others patients’ experiences on treatment.”

Get Involved in Arthritis Research

If you are diagnosed with RA or another musculoskeletal health condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first ever patient-led, patient-centered research registry for joint, bone and inflammatory skin conditions.

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