Patient Perspectives on Arthritis Research
Nearly one-quarter of American adults have been told by a doctor that they have arthritis. The lived expertise of people with the condition informs PCORI research on arthritis, which includes patients at every step of the way—from topic generation to study design and conduct to dissemination of results among patients and clinicians who can use them to make healthcare decisions.
The Arthritis Foundation takes a similar view of patient engagement, bringing scientific experts and clinicians together with people who have arthritis and their families. The foundation also has committed to funding research to develop more effective arthritis treatments.
PCORI and the Arthritis Foundation work in partnership to provide leadership in comparative clinical effectiveness research (CER) on arthritis. This is research that compares treatments to learn which are the most effective for which patients.
The two organizations hosted a Facebook Live event to discuss this health condition and answer questions about patient-centered arthritis research.
In observance of National Arthritis Awareness Month, two Arthritis Foundation members—an individual with rheumatoid arthritis and a mother of two children with juvenile idiopathic arthritis—shared their experiences with us.
What is it like for you and your family to live with the disease?
Cindy Kimberly: Most people, thankfully, will never know what it’s like to live with pain daily: to have pain rob you of your sleep and the ability to do the things you love with your family; to have had to recover from over 15 surgeries on 20-plus sites in your body.
When I was younger, I wasn’t able to attend high school for two years because my joints wouldn’t allow me to carry all my books, open a locker, and get to my next class in time.
Later, it took some effort to get off all my meds to try to become pregnant. I had a great pregnancy and delivered a perfectly healthy son, but I experienced a significant flare after delivery. It caused difficulties even with changing diapers and made me fearful that I would drop my 6-pound baby.
Even if you find the magic bullet that alleviates swelling and pain, there’s still the fatigue. And don’t forget about the side effects that wreak havoc on your body.
There is a silver lining! Now is the best time ever to be diagnosed with rheumatoid arthritis because of all the drugs available. Also, living with chronic pain and fatigue makes you truly appreciate the good days, for they are a gift.
To me, research now means hope, and I am thrilled that my girls’ medical data can help research improve care for all kids who are affected by this disease.
Anjie Vago
Anjie Vago: I have two children with this disease. It has changed our family’s life in every way imaginable. It demands a lot of our time because of doctors’ appointments and all the learning that needs to occur.
As a parent, I’ve had to learn to speak up, be assertive, and advocate for my kids. My girls have had to find their voices in a way most kids don’t have to. They have a vocabulary that would stump many very educated adults.
Our perspective on life has also changed dramatically. We’ve learned to be a lot more flexible because this disease is unpredictable.
I think we’ve also become more compassionate, knowing that things aren’t always what they seem on the surface. Sometimes that means reaching out to another parent or child who is struggling, and sometimes that means volunteering with organizations like the Arthritis Foundation.
Have you had firsthand experience with research?
Cindy Kimberly: In the mid-90s, my rheumatologist suggested I join a double-blind clinical trial for a biologic drug. I was in my mid 30s, and I’d already been suffering with rheumatoid arthritis since I was 15 and had had multiple joint replacement surgeries. Nothing was helping. I had nothing to lose!
The treatment made me feel better, but it caused some side effects. Ultimately, I decided against taking it. This is common for arthritis patients. You have to weigh the benefit of treatment against the possibility of side effects.
Anjie Vago: Almost two years ago, I became the parent representative from our hospital to the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), a network of clinicians and families working to transform care for children with rheumatic conditions. PR-COIN is part of PARTNERS, one of the networks that make up PCORnet, PCORI’s clinical research network. I joined PR-COIN’s research subcommittee. It has been incredibly helpful to learn more about how research works, what constitutes good research, and how to read research studies. This has had a direct impact on our family’s level of understanding of juvenile arthritis and its treatment.
To me, research now means hope, and I am thrilled that my girls’ medical data can help research improve care for all kids who are affected by this disease.
Do you expect comparative effectiveness research to help you make decisions?
Cindy Kimberly: Comparative effectiveness research is overdue. There have been many times that my rheumatologist and I made a decision based on his advice, because we had no literature available on a new drug. There have been other times when I’ve been given so much literature that it’s almost impossible to make my way through it all.
Having an independent funder like PCORI is really critical to producing unbiased and patient-centered CER.
Anjie Vago: We’ve always been given a lot of information when making treatment decisions; our rheumatologists have been great in that area!
I am thankful for the tools that have been, and are being, developed as a result of this type of research to aid parents and patients in decision making. This research is improving the quality of care and the relationships between providers and patients.
The views expressed here are those of the authors and not necessarily those of PCORI.