Getting Real About Rheumatoid Arthritis Treatment
Research shows that people with RA seek information from their peers to make decisions about medication and disease management. This patient-to-patient video series may help.
When you’re diagnosed with rheumatoid arthritis (RA) — a chronic inflammatory disease that causes joint pain and swelling, fatigue, and a host of other symptoms — taking medication is usually a necessary first step.
Many different kinds of medications are used to manage RA. Some trial and error is often required. Starting or changing treatment can be confusing, overwhelming, and frustrating. While it’s important to work with your doctor, new research from experts at Yale and Carnegie Mellon shows that RA patients feel their doctors can’t always provide them with all the information they need to make treatment decisions. They value hearing from fellow patients.
The Global Healthy Living Foundation, through our CreakyJoints and ArthritisPower patient communities, partnered with these researchers to facilitate candid discussions about RA treatment. The following videos feature a diverse group of people with rheumatoid arthritis talking about their personal experiences with treatment. We hope they help you work with your doctor to find the right treatment plan for you.
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Learn More About the Science Behind This Project
What We Studied
This project is based on the “mental models approach to risk communication” (Morgan et al, 2002). A mental model describes how a group of people think and feel about a specific idea. We studied how patients and rheumatologists think about treatment for RA. We interviewed doctors and patients one at a time to explore all the factors that influence how they make decisions. Then we did a large survey of RA patients to test our findings further.
What We Learned
When we compared patients’ and rheumatologists’ mental models, we found that both agreed on the importance of adding or switching medications to prevent long-term joint damage and other complications of RA. But some patients felt that changing medications was hard because you don’t know whether a new medication will work or whether you may develop side effects. Patients emphasized the importance of getting enough good information before starting a new medication. Many felt that their rheumatologists could not provide them will all the information they needed and that it was important to learn from their peers.
How It May Help Patients Like You
Based on this information, we made several videos to help people understand how other patients deal with difficult decisions regarding the treatment and management of RA. We hope that our research helps doctors and patients better understand one another so that they can communicate more effectively about their goals and in order to help patients feel better.
Getting Started on Rheumatoid Arthritis Medications
RA patients weigh in on their hesitations and fears about starting medication — and what they’ve learned since.
Redefining Your Goals with Rheumatoid Arthritis
It’s so easy to lose motivation when it comes to sticking to your goals with RA. You’ll hear from other RA patients and how they are able to move past feeling stuck.
Taking a ‘Drug Holiday’ from Rheumatoid Arthritis Medications
RA patients discuss the desire to take a break from their treatment — as well as the consequences on their health.
How Rheumatoid Arthritis Medications Help Me
RA patients share how medication has helped manage their symptoms and changed their lives.
Changing Your Rheumatoid Arthritis Medication Part 2
RA patients discuss their arthritis journey and what lead to their decision to
switch medications.
About the Research Team
Jillian Rose, PhD, MPH, LCSW
Dr. Hsiao is a rheumatologist at Yale Medicine and a Clinical Instructor at the Yale School of Medicine. She conducts clinical research on shared decision-making between doctors and patients.
Betty Hsiao, MD
Dr. Nowell is the Director of Patient-Centered Research at the Global Health Living Foundation, where he serves as a Co-principal Investigator of ArthritisPower, a research registry for rheumatic and musculoskeletal conditions.
W. Benjamin Nowell, PhD
Julie Downs, PhD
Dr. Downs is an Associate Professor at Carnegie Mellon University in the Dietrich College of Humanities and Social Sciences. Her work focuses on improving decision-making by assessing peoples’ perspectives and values and by making technical information more accessible.
W. Benjamin Nowell, PhD
Get Involved in Arthritis Research
If you are diagnosed with arthritis or another musculoskeletal 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. Learn more and sign up here.
CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.
RA Patient Perspectives: Treatment and More
This video series features the perspectives of other patients. This is not medical advice and should not take the place of professional medical care.
This video is part of an educational project from the following research centers.
It was made possible with support from the Rheumatology Research Foundation.
Getting Real About Rheumatoid Arthritis Treatment
Liana Fraenkel, MD, MPH
Dr. Fraenkel is a rheumatologist at Berkshire Medical Center and an Adjunct Professor at the Yale School of Medicine. Her research interests focus on applying scientifically rigorous approaches to better understand and improve patient and physician decision making.
Betty Hsiao, MD
Dr. Hsiao is a rheumatologist at Yale Medicine and a Clinical Instructor at the Yale School of Medicine. She conducts clinical research on shared decision-making between doctors and patients.
Dr. Rose is the Assistant Vice President for Community Engagement, Diversity, and Research at Hospital for Special Surgery. Her work addresses inequalities in health care through educational interventions that lead to patient partnerships and enhanced quality outcomes.
Jillian Rose, PhD, MPH, LCSW
Liana Fraenkel, MD, MPH
Dr. Fraenkel is a rheumatologist at Berkshire Medical Center and an Adjunct Professor at the Yale School of Medicine. Her research interests focus on applying scientifically rigorous approaches to better understand and improve patient and physician decision making.
Taking Care of Mental
Health When You Have Rheumatoid Arthritis
RA patients open up about how the disease can affect anxiety, depression, stress, and more.
Starting Methotrexate for Rheumatoid Arthritis Part 2
Hear RA patients talk about their experience with getting started on Methotrexate and the thoughts they had leading up to it.
Talking to Your Family and Friends About Rheumatoid Arthritis
RA patients share how they discuss their diagnosis with friends and family.
Changing Rheumatoid Arthritis Medications Part 1
RA patients reveal how it feels to acknowledge when treatment isn’t working — and how to move forward to find a plan that helps.
Starting Methotrexate for Rheumatoid Arthritis Part 1
RA patients share what it’s like to take this commonly prescribed medication, how they cope with side effects, and more.
Partnering with Your Rheumatologist to Manage Rheumatoid Arthritis
RA patients talk about how to find the right doctor, improve communication, and advocate for better care.
Asking For Help with
Rheumatoid Arthritis
RA patients open up about how they have asked for help and how they have gotten better at receiving help.
