Category Archives: Research

Meet Olivia Kwan: One of Our Newest Foundation Sponsored Fellows!

Right now, access to care is not always guaranteed for arthritis patients, and the problem is even worse for children living with juvenile arthritis. A child with arthritis currently travels an average of 57 miles to be seen by a pediatric rheumatologist. The Arthritis Foundation  has been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. In 2018 we announced five fellowship awards; one of those grants was offered to the Riley Hospital for Children at Indiana University Health, which recently announced their fellowship has been awarded to Dr. Olivia Kwan.

Continue reading Meet Olivia Kwan: One of Our Newest Foundation Sponsored Fellows!

Meet Dr. Laura Cannon: One of Our Newest Foundation Sponsored Fellows

Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. As one of the five new 2020 fellowship grant awardees, Duke University announced their fellowship has been awarded to Dr. Laura Cannon.

Continue reading Meet Dr. Laura Cannon: One of Our Newest Foundation Sponsored Fellows

OA Patient Guidelines

Arthritis Today’s Snapshots from the ACR Meeting: Part 3

The editors of Arthritis Today magazine were on the scene, collecting news and information to share with readers from the American College of Rheumatology’s (ACR) Annual Meeting, November 9-13, in Atlanta. Here are a few of the many interesting and enlightening research topics they learned about.

Continue reading Arthritis Today’s Snapshots from the ACR Meeting: Part 3

OA Patient Guidelines

Arthritis Today’s Snapshots from the ACR Meeting: Part 2

The editors of Arthritis Today magazine were on the scene, collecting news and information to share with readers from the American College of Rheumatology’s (ACR) Annual Meeting, November 9-13, in Atlanta. Here are a few of the many interesting and enlightening research topics they learned about.

Genes Play a Role in Disease Changes in Pregnancy
What do women with rheumatoid arthritis (RA) expect when they are expecting? The rule of thumb has long been that RA goes quiet during pregnancy but flares after delivery. But that’s not true for everyone, and researchers in Copenhagen, Denmark, and Oakland, California, are trying to figure out why. In two small studies, they looked at gene expression profiles of women with RA who had similar disease activity pre-pregnancy, and then again during the third trimester and at three months post-partum. They compared these gene profiles to those of healthy women. Researchers found a pre-pregnancy genetic signature that predicted improvement or worsening during pregnancy. They also found differences between the RA and healthy groups in gene expression during the post-partum period. –MARCY O’KOON

Patient Partner Perspective: Shannan O’Hara-Levi attended a couple sessions related to rheumatic conditions and pregnancy. As a patient of child-bearing age, she is concerned about having enough resources and information about family planning with RA but also how any reproductive health legislation impacts rheumatology patients.

 “Rheumatology patients and their rheumatologists need to strengthen their conversations about their reproductive health.” –Shannan O’Hara

Rheumatology patients who plan their pregnancies have better outcomes according to some of the research she heard at ACR, so Shannan wants other patients with RA like her to understand how vital it is to communicate and discuss any family planning with their doctors. She says this states the case for even more support for patient engagement in the decision-making of health care for arthritis.

Is Remission That Important Anyway?

A presentation by members of EULAR (the European League Against Rheumatism), deconstructed remission – that is, the absence of disease activity in inflammatory types of arthritis (such as RA). Titled “The Road to Remission is Long and Bumpy but Worth It in the End,” the presenters first examined how remission is measured. (Doctors use 17 different combinations of function scales, blood markers and joint exam results.) Another presenter looked at the benefits of remission, including better function, less disability and joint damage and longer overall survival – but noted that there is a trade-off between the aggressive treatment needed to achieve remission (more medication, more doctor visits and tests) and the benefits of achieving it. A third presenter examined whether certain medications are better for achieving remission, or if it’s the overall strategy that counts. (Hint: it’s the strategy.) And the last presenter took a look in the crystal ball to see if doctors will be able to predict remission using molecular changes, similar to methods used for certain types of cancer. The answer? Yes, but not yet. –ANDREA KANE

Machine Learning Used to Predict Flares
Doctors cannot predict which RA patients can successfully taper or stop biologics. A group of researchers set out to determine whether a machine could do better. They designed a computer algorithm that used real-world patient clinical data and analyzed variables, such as percentage change in biologic dose, disease activity, disease duration and levels of inflammatory markers. They found that a machine could learn to predict flares after tapering and saw its performance improve as more patients’ clinical data was added. The aim is one day to provide physicians with a reliable tool for guiding decisions about tapering medication. – MARCY O’KOON

Why Sky-High Biologic Prices?
Public spending in the U.S. on biologics almost doubled between 2012 and 2016 due mostly to drug price hikes over those years – not to more people getting access to them, one study found. Natalie McCormick, PhD, a post-doctoral fellow at Harvard Medical School and Mass General Hospital, and her team analyzed data from Medicare (Parts B and D) and Medicaid. In one analysis, for example, they determined that price increases for 11 biologics accounted for 56% ($1.7 billion) of the increased spending (after adjusting for inflation) in Medicare Part D, compared to 37% ($1.1 billion) for an increase in new users. Adalimumab (Humira) and etanercept (Enbrel), two of the oldest and most widely prescribed biologics, had the biggest increases in price. ––ANDREA KANE

Tapering Biologics When They’re Hard to Get
In the United States, people who take biologics and reach remission are often eager to taper off the medication, but in New Zealand, the decision is difficult, even though it’s recommended by EULAR. In her abstract session, “Rheumatoid Arthritis Patients’ Perspectives on Tapering of Biologics,” Lisa Stamp, PhD, of the University of Otago in Christchurch, explained that fewer biologics are available to people with inflammatory arthritis in New Zealand, where a government agency decides which drugs are subsidized. Patients must try and fail numerous other medications (from methotrexate to gold shots) for many months before qualifying for a subsidized biologic. “These people have been through a lot to get to a biologic,” Stamp said. As a result, they were anxious that if they tapered off it, they wouldn’t be able to get it again if their disease worsened. However, not having to get injections or infusions “makes you feel like you’re well.” Participants wanted to make the decision to taper with their rheumatologist, but better tools are needed to help patients make the decision and feel assured that their needs would be addressed. –JILL TYRER

Inflammatory Arthritis Infection Risks After Joint Replacement
Despite the good safety record of nearly 1 million total hip and knee replacement surgeries performed annually in the U.S., they are not without risk, including infections. A study presented by Susan Goodman, MD, director of the Integrative Rheumatology and Orthopedics Center of Excellence and the medical chief of the Combined Arthritis Program at the Hospital for Special Surgery, showed that rheumatoid arthritis (RA) patients are at a higher risk of developing a prosthetic joint infection compared to those with OA. In addition, the length of time after surgery that patients stayed at risk was longer for those with RA than OA. Dr. Goodman cited several reasons, including the use of medications such as immunosuppressants, having active RA, having disabilities, the implants themselves, tobacco use and revisions of previous implants. – BRYAN D. VARGO

Patient Partner Perspective: Laura Genoves attended this session, which brought up some major concerns for patients with RA like her.

 “Hearing that RA patients have an increased risk of infection after joint replacement surgery made me feel wary.” – Laura Genoves

Laura was glad to learn that researchers are trying to better determine what factors contribute to this increased risk of infection. People with RA must be aware of what can potentially happen post-surgery. All surgeries come with risks associated, but it’s a whole other level of risks to consider for people with RA, so Laura feels like this is definitely something patients should know and discuss with their rheumatologists.

 

OA Patient Guidelines

Arthritis Today’s Snapshots from the ACR Meeting: Part 1

The editors of Arthritis Today magazine were on the scene, collecting news and information to share with readers from the American College of Rheumatology’s (ACR) Annual Meeting, November 9-13, in Atlanta. Here are a few of the many interesting and enlightening research topics they learned about.

Anti-inflammatory Diet Improves Disease
Strawberries, apples, brussel sprouts on a tableThere has long been uncertainty whether diet influences disease activity in inflammatory arthritis. Two studies presented some evidence that it does. In one study, 17 patients with active rheumatoid arthritis (RA), defined as at least three tender and three swollen joints, followed an anti-inflammatory diet for two weeks. Blood tests before, during and after measured oxylipins, molecules involved in inflammation, pain and other cellular functions. The diet added turmeric, antioxidants, prebiotics and probiotics. It eliminated pro-inflammatory items, such as lactose (found in diary), gluten and red meat, and improved the ratio of omega-3 to omega-6 fatty acids. The subjects were found to have good diet adherence. After 14 days, a range of disease measures were significantly lower, and tests showed correlation with changes in blood levels of the oxylipins. The authors concluded that diet has the potential to complement medication and improve quality of life for patients with RA.  –MARCY O’KOON

Depression and Resilience
Inflammation has been shown to have a role in depression, but does that make depression an inflammatory disorder? No, emphasized Andrew Miller, MD, a researcher in Emory School of Medicine’s psychiatry department. Depression may be associated with the inflammation that’s at the heart of inflammatory diseases like rheumatic and psoriatic arthritis and lupus, but it’s not associated in otherwise healthy people with depression. (Biologics that have been used to target inflammation in depression have had no effect.)

In the same session, “Mechanisms & Mediators of Psychiatric Comorbidity in Rheumatology,” Afton Hassett, a psychologist and researcher in the University of Michigan’s Chronic Fatigue and Pain Research Center, explored the role of resilience in people with arthritis and pain. People with rheumatic diseases tend to have a more negative outlook than “healthy” people do, but positive emotions – which are key to resilience – are associated with less pain, less need for medications, earlier discharge from the hospital and other positive outcomes. The good news is that resilience can be learned. Hassett described some exercises, including these three: 1) Pick a future point, such as one or five years from now, and imagine being your best self, living to your full potential, then write about it in detail. 2) Every day write down three things for which you are grateful; as time goes on, you’ll become aware of even smaller things to appreciate. 3) Pick a day this week and do five kind things for others and one kind thing for yourself. – JILL TYRER

Patient Partner Perspective: Stacy Courtnay attended this session on pain, depression and anxiety and said it really resonated with her.

 “The more connections you have with people living in a similar situation as you, the better mental and emotional health you will have. Support groups are the key to managing your overall well-being.” – Stacy Courtnay

Stacy says “we need the support of each other” and being involved in the Arthritis Foundation has really helped her to make these connections since it is a big part of the mission. The Live Yes! Arthritis Network has played a huge role in helping her to get connected with people who understand her struggles.

The Problem of Sleeplessness
It’s no surprise to people with arthritis that pain interferes with sleep; research shows that the more significant correlation is that sleeplessness exacerbates pain. Anna Kratz, PhD, of the University of Michigan, and Daniel Whibley, PhD, of the University of Aberdeen in the U.K., discussed effects of poor sleep on people with arthritis and treatments in a session called “No More Counting Sheep: Evidence-Based Sleep Management.” (In fact, Whibley said, it takes 20 minutes longer to fall asleep by counting sheep than by using relaxing visualization.) He discussed the role of the circadian rhythm in different people’s sleeping patterns (“morning larks” vs. “night owls”) and the architecture of a night’s sleep (it’s normal to wake up a couple of times during the night). And he said people with rheumatic diseases typically have poor “sleep efficiency” – they spend more time lying awake relative to sleeping than other people do. Sleep deprivation leads to mental impairments as well as pain and fatigue, and people with sleep problems should be screened for the cause, such as obstructive sleep apnea or chronic insomnia – both of which are common among people with arthritis – or side effects of opioids or other medications.

Good sleep hygiene (getting regular exercise; keeping a dark, quiet bedroom; keeping a regular sleeping schedule; shutting off blue-light electronics, etc.) helps many people, but people with rheumatic disease may need more help. The American Academy of Sleep Medicine discourages the use of sleep medications and recommends cognitive behavioral therapy for insomnia (CBTi) as a first-line treatment. In the U.S., however, it’s hard to find people qualified to practice CBTi. (Whibley and Kratz suggested rheumatology practices have someone trained in CBTi.) “The most important thing is to be regular in your sleep-waking patterns, and that includes weekends,” Whibley said. If you don’t sleep well, seek help. “Don’t assume that poor sleep in part of the condition.” –JILL TYRER

Patient Partner Perspective: Cheryl Crow attended this session on sleep, which she stated was a very informative and engaging session. She was surprised by some of the information she learned when it comes to sleep and the rheumatic disease population. Cheryl said having a patient on this sleep panel sharing her story was powerful to witness as a patient herself. 


“Insomnia and obstructive sleep apneas are much more common in the rheumatic disease population than in the average person, and that 37-50% have some sort of disorder. I had no idea. Makes me want to get assessed.” – Cheryl Crow

She was moved to see that so many rheumatology professionals were in the room asking questions to get the patient perspective, demonstrating that patient engagement is crucial in providing better patient care.

Standard PRO Measures Miss Younger Patients
Patient-reported outcome measures (PROMs) are routinely used by doctors as well as in research, but Erika Mosor, a researcher at the Medical University of Vienna, Austria, found that the standard measures may not get a true view of younger patients. In her session, “When You Read This, You Really Feel Old: Perspectives of Young People with Inflammatory Arthritis on Patient Reported Outcome Measures from a European Qualitative Study,” she reported that patients aged 18 to 35 said the PROMs of daily functioning and other issues “seem like they’re for old people.” They don’t address technology, childcare, social life, sex, loss of friends and other issues relevant to younger patients. Because their concerns are overlooked, results may be skewed so these patients appear to be doing better than they are; some patients said they considered marking worse scores just to get their concerns recognized. PROMs should be more tailored to patients so they can be used more effectively in shared decision-making, Mosor said. – JILL TYRER

 

Meet Sabina Ratner: One of Our Newest Foundation Sponsored Fellows!

Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. This year we announced four new fellowship awards . One of those grants was offered to SUNY Downstate Medical Center, which recently announced their fellowship has been awarded to Dr. Sabina Ratner.

Dr. Ratner will be a welcome addition to this program. She began her undergraduate training at Brooklyn College, followed by graduate training as a physician’s assistant (PA) at SUNY Downstate in NY. She earned her medical degree from American University of Antigua College of Medicine in Antigua and Barbuda.

Dr. Ratner explains how she became interested in rheumatology:

As we go through life, events that may be deemed unfortunate often result in serendipitous moments. It wasn’t until a terrible accident where I was hit by a car that I realized I had a second chance at life and found my true calling.

I worked as a PA at NY Methodist Hospital for seven years before my accident. During my employment, I covered a variety of services, and I discovered that there were many facets to medicine that were fascinating, stimulating and rewarding. My experiences helped sharpen my clinical acumen and appreciation and understanding of medicine. Initially, I worked with the department of surgery, which included general surgery and orthopedics. My duties included patient care in the clinic and floors, emergency room admissions, pre- and post-operative care and counseling patients. As a PA, I was inspired by the passion and wisdom of the people I worked with. My colleagues recognized my aptitude for medicine and strongly encouraged me to get my medical degree.

After my accident, I went to rehab for physical therapy for my left leg and ankle. There, I met many people who were suffering from rheumatoid arthritis, osteoarthritis, back pain and hip and other joint problems. I empathized with these patients. Seeing people in pain and losing their functional mobility made me realize I wanted to seek a profession where I could help alleviate the pain and suffering of others. I found the rehab experience to be very rewarding and realized that, with proper treatment, people were able to regain their function, mobility and independence. My interest grew more and more for the field of rheumatology, so I went back to school and earned my medical degree.

The next stage of this journey was medical residency. I chose to explore the field of rheumatology further and opted to take as many electives as I could to learn more about this field. The experience further piqued my interest and helped me realize how fascinating and intricate rheumatology is.

There are many reasons why I want to join the field of rheumatology. I find it to be a very diverse field that is rapidly evolving and allows for the treatment of a broad range of conditions. Also, it is a specialty that can be challenging because a qualified physician must be able to treat different disease processes, solving medical mysteries. It is exciting and gratifying to help improve the quality of lives of others. I want to train and learn from the dedicated experts, which will give me the opportunity to broaden my understanding and knowledge about the disease progression and treatment with new agents that prevent further destruction in the body.

While the clinical experience is important to me, I’m also interested in pursuing biomedical research. Fundamentally, I am intrigued by the immune system. With the advances in disease-modifying agents and with new immunotherapies, we can improve patients’ lives. That’s why I hope to follow my passion and become a rheumatologist, because to me it’s very rewarding to see my patients get back to their routine and enjoy their life.

Thanks to the generosity of our donors, Dr. Ratner will be able to follow her dreams and become a valuable addition to the number of new rheumatologists through this fellowship program.

 

OA Patient Guidelines

Working to Develop OA Patient-Centric Guidelines

The Arthritis Foundation is proud to have partnered with the American College of Rheumatology (ACR) on the release of new guidelines for the management of osteoarthritis (OA) of the hand, knee, and hip. The guideline process included input from OA patients, which was made possible through the Arthritis Foundation and ACR partnership.

“Traditionally, the patient voice has been invoked, but not always present, as guidelines are developed,” said Guy Eakin, Senior Vice President of Scientific Strategy for the Arthritis Foundation. “Through our partnership we were able to marry the ACR rheumatology expertise with the Live Yes! patient community to pioneer a process assuring guidelines that treat patients reflect the unique perspectives of the patients who will receive them.”

The new guidelines were presented as part of the 2019 ACR/Association of Rheumatology Professionals (ARP) Annual Meeting held in Atlanta on November to discuss the process of how the guidelines were developed and the results.

“We are proud to have been involved in this work and to facilitate the important contributions of the patient partners,” said Cindy McDaniel, Arthritis Foundation’s Senior Vice President of Consumer Affairs. “Their lived experiences truly helped to guide this project.”

The draft guidelines include the following Strong Recommendations, for which there is strong evidence for benefits, clearly outweighing harms for almost all OA patients:

  • Educational, behavioral, and psychosocial approaches:
    • Weight loss, especially for those with hip and knee OA.
    • Self-efficacy, self-management programs to help build skills like fitness and exercise goal‑setting, problem-solving, and positive thinking.
  • Mind-body and physical approaches:
    • Exercise: aerobic, strengthening, neuromuscular, and aquatic exercise are all recommended.
      Note: exercise may be more effective if supervised, so patients may consider supervision by a physical therapist.
    • Tai-chi, especially for those with hip and knee OA.
    • Medical devices and aids: Use of canes (for hip and knee OA), orthotic devices, and wrist braces.
  • Pharmacological approaches
    • Topical non-steroidal anti-inflammatory drugs (NSAIDs, especially for knees)
    • Oral NSAIDs
    • Intra-articular steroid injections (knee, hip)
    • Imaging guidance for injections (hip)

The draft guidelines include the following Conditional Recommendations, for which there is less evidence that benefits may outweigh harms, for a majority of OA patients:

  • Educational, behavioral, and psychosocial approaches:
    • Cognitive behavioral therapy.
  • Mind-body and physical approaches:
    • Yoga, especially for those with knee OA.
    • Balance training, especially for those with hip and knee OA.
    • Medical devices and aids: Use thermal interventions, radio‑frequency ablation (knee), medical tape, orthotic devices, acupuncture, and knee braces.
  • Pharmacological approaches
    • Topical NSAIDs (hand)
    • Topical capsaicin (knee)
    • Intra-articular steroid injections (hand)
    • Intra-articular steroid injection over other injectables
    • Chondroitin sulfate (hand)
    • Acetaminophen
    • Duloxetine (knee)
    • Tramadol

Learn more by reading the paper containing the full list of recommendations and supporting evidence.

Aside from recruiting patients to participate in the development of these guidelines, the Arthritis Foundation also brought nine arthritis patient partners to the 2019 annual meeting to help elevate the patient voice and perspective.

The meeting was attended by close to 16,000 rheumatologists and other rheumatology healthcare professionals, researchers, fellows in training and exhibitors from more than 100 countries gathered to learn about the latest scientific advances, clinical issues, and engage in professional development.

Join the Live Yes! Arthritis Network FOR FREE. Our community is here to help you.

 

Arthritis Foundation Patient Partners

Daily Dose – Arthritis Foundation Patient Partners Perspective

The Patient Voice in Action
November 13, 2019

Today during #ACR19, our Patient Partners were able to see why having the opportunity to provide patient input can make a difference. Here’s the daily dose of what they learned as the meeting wraps up today & why it matters for people with arthritis.

Patient Engagement in New OA Guidelines
New draft guidelines for the treatment of osteoarthritis (OA) were released and discussed during a presentation today. I appreciated the ACR partnering with the Arthritis Foundation to provide patient input in this process. Although I was not one of the patients on the task force, I was glad to be attending this session in person where they officially released this new information. It provided me the opportunity as a patient to provide feedback and ask a question about the guidelines since I live with osteoarthritis.

“It’s important as patients that we are able to provide input on these types of guidelines, since we’re the ones living with the daily pain.” – Raquel Masco

 

The new guidelines provide an update on what the latest research supports as far as treatment for OA. I had the opportunity to ask why massage is listed as a treatment the research is “conditionally against” for hip and knee OA, especially because I love a good massage. Basically, it can be an effective treatment for some people, but not everyone and this is all based on what quality research is available to support it. Unfortunately, there’s not a lot of good research when it comes to massage for hip and knee OA. It doesn’t mean I won’t still go or that people shouldn’t if it helps you. A lot of the things the guidelines are conditionally against seem to be a big point of discussion for why more research is needed.

That’s why it’s so important for us as patients to raise our voices, raise awareness and raise funding to support more research for arthritis.
By: Raquel Masco

Arthritis Foundation Patient Partners shared their stories in the exhibit booth at the ACR annual meeting. (Pictured from left: Raquel Masco, Kevin Purcell, Shannan O’Hara-Levi and Ife Okwumabua) 

Managing the Difficult-To-Treat RA Cases
During a session titled – How do I manage this Patient? Difficult-To-Treat RA Cases, a panel of rheumatologists discussed crowd-sourced questions regarding multi-level patient needs within the rheumatology practice. As a patient listening in to this discussion, I was interested to hear the vast difference between the rheumatology panel and how they would treat a specific patient.

The discussion of steroid use is a hot topic, as multiple other sessions really focused on this, and was mentioned on this panel. The panelists mostly agreed that prednisone use is a very individualized decision in the course of treatment. The use of steroids among this group is recommended to be in short durations and usually often only used short-term while waiting for other interventions to take effect.

This panel also explored patients of child-bearing age and the use of methotrexate. Interestingly, the topic of methotrexate being prescribed to a male who was attempting to start a family was also discussed and had varying recommendations throughout the panelists. It is widely known that methotrexate is contraindicated in female patients who plan to become pregnant, but biologics are prescribed. This was an important topic especially in a newly diagnosed patient as reimbursement requirements vary for prescribed medications.

 “As a patient, my takeaway from this session was the importance of being an informed patient.” – Shannan O’Hara-Levi

On the panel it was mentioned that there are specific models that rheumatologists usually need to follow however, one stated that there is patient to patient variation and models do not always fit. This seems like a no-brainer to me, however, due to insurance issues, legislation and cost driven intervention, this is a major patient/doctor concern. Price of treatment, especially in newly diagnosed patients and those with specific insurance regulations, is a driving factor to treatment.

Having the opportunity to be here to see these medical professionals’ debate and learn from each other is an amazing experience. Research is constantly changing, and the field of rheumatology is constantly expanding and growing. My recommendation to other patients like me is to ask questions. If something doesn’t feel right to you, then speak up to your rheumatologist.
By Shannan O’Hara-Levi

We’ll recap all the highlights from the Arthritis Foundation Patient Partners from their time at the American College of Rheumatology annual meeting, so stay tuned. Check out the other ACR Daily Dose blogs to read more from the patient perspectives.

Arthritis Foundation Patient Partners

Daily Dose – Arthritis Foundation Patient Partners Perspective

Patient Voices that Take ACR from Theory to Reality
November 12, 2019

Today during #ACR19, our Patient Partners were able to connect with rheumatologists and researchers about the ways that their stories can inform their work. Here’s the daily dose of what they learned & why it matters for people with arthritis.

Perspectives on Patient Engagement in Research

Patients and their caregivers are the experts in their experience – and that expertise is valuable to providers and researchers as they investigate new therapies. Today, we got to hear from excellent speakers about the value of sharing our patient perspectives – and the many ways that we can be empowered to tell our stories.

 “True patient engagement is providing patients an opportunity to help you BUILD the box, not just check it.” – Corinne Pinter

We learned that it is not just providing a patient testimony or sharing an idea about how things can be better. Sharing our stories can be as simple as taking a survey, like the Arthritis Foundation INSIGHTS assessment. It was so inspiring to hear about the more than 20,000 INSIGHTS assessments that the Arthritis Foundation has collected and the ways that that information can help our doctors deliver care.

The more that we are able to share our stories, the more we are able to help others understand why patient engagement is so important.

“I’ve seen my story make a difference for researchers through the relationship that the Arthritis Foundation has with the PARTNERS like CARRA & PR-COIN.” – Kate Kuhns

By: Corinne Pinter and Kate Kuhns

Track Your Wonder Drug with a Wearable Device
Exercise: the Wonder Drug

There’s a lot of research to support physical activity as being one of the most beneficial treatments for people with all types of arthritis. I learned the research shows the most benefits for those who exercised longer than 3 months. It helps to reduce inflammation, pain, stiffness and fatigue in many patients. For people with osteoarthritis like me, if you’re overweight, losing the extra weight is so important. Another motivating reason to exercise is the 40-60% increased risk for cardiovascular diseases when you have a rheumatic condition. These are the reasons we’re at a higher risk for cardiovascular issues:

  • Inactivity
  • Being overweight
  • Systemic inflammation
  • Age, pain, sleep (not enough sleep, poor quality sleep)
  • Lack of physical activity support

One of the researchers discussed High Intensity Interval Training (HIIT), which peaked my attention. HITT combines vigorous activity of high intensity training, but not high impact, with short intermittent breaks to rest. This type of workout showed similar physiological benefits compared to less intense exercise with a long duration. The research showed changes occurred in as little as two weeks. I can attest to the benefits of HIIT personally.

 “I started doing HIIT training myself about a year ago. That along with proper diet helped me to lose weight and maintain weight loss to the point where I can have a more active lifestyle.” – Nick Steen

Wearable Technologies Can Help Increase Physical Activity
Another session I attended also discussed the importance of physical activity when you have a form of arthritis. Having wearable technology helps to hold ourselves accountable to maintaining physical activity levels. One of the researchers reported that the wearable devices (like Fitbit or pedometers) helped to increase the number of steps that people took and increase their activity levels. It’s a good way to actually change behaviors when it comes to exercise.
By Nick Steen

A Public Approach to Arthritis Pain
By Stacy Courtnay

There’s growing attention to chronic pain in public health and this is good for people living with arthritis and rheumatic conditions. This session really spoke to my passion in raising awareness about how hard it can be to live with rheumatoid arthritis. We need to speak up and educate others on arthritis and how debilitating it is. The more awareness we can bring, the more funding we can get and this can bring us closer to a cure.

“This is so important to me and our mission at the Arthritis Foundation. Do not suffer in silence!  Share your story.”  – Stacy Courtnay

Stay tuned for more highlights from the Arthritis Foundation Patient Partners as they wrap up their time at the American College of Rheumatology annual meeting. Check out them out on Twitter, Facebook and Instagram as they share information throughout the day while they represent your patient voice.