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.
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.
The Arthritis Foundation recently funded two new Childhood Arthritis and Rheumatology Research Alliance (CARRA) transdisciplinary research grants. Dr. Joyce Chang and Dr. Natoshia Cunningham have been awarded two years of funding for each of their projects.
A big part of our Collaborating With Patients for Better Health scientific initiative has been creating the Rheumatology Learning Health System (RLHS) in collaboration with major partners. The goal of RLHS is to improve quality of care by enhancing communication between patients and their doctors through electronic dashboards.
These dashboards support meaningful conversations and shared decisions about care and treatment plans. They include patient-reported outcomes (PROs), enabling patients to list questions and concerns in advance of a clinical visit. Patients and doctors can turn on/off different data elements to focus on the most meaningful data.
During the pilot phase of this project, the group created and tested paper-based versions of the dashboard at three pediatric sites. In the next phase, electronic versions of the dashboards are being created, and adult sites are being added. Jennifer is helping us make this project successful.
Jennifer is a member of the Dartmouth-Hitchcock Adult Pilot Site Team. She was diagnosed with rheumatoid arthritis (RA) 10 years ago. While being treated with methotrexate, she started experiencing flares. Her doctor prescribed a short course of prednisone.
Reviewing the RLHS dashboard (like the one below) with her doctor helped them both see the visual of her joint count increasing in her RAPID3 scores. This led to her trying a new medication. Seeing Jennifer’s data at a point-in-time, and then over time, helped her and her doctor see how her RA disease activity needed a different treatment approach.
Jennifer says, “In the past, when thinking about a change in therapy, I’ve had some hesitation. It involves weighing how well I’m currently doing against things like possible side effects. What impact will the new medication have? Will I feel better? And equally important, what’s the added cost of a new medication?”
The dashboard helps focus conversations between patients and doctors. Asking patients like Jennifer the “Why” behind the reluctance or hesitation about changing medications invites a conversation about patient preferences and whatever extra help they may need.
“We’re trying to improve patient care by helping patients and doctors prepare for office visits, working together as a team, and improving communication between visits,” explains Arthritis
Foundation Senior Vice President Guy Eakin, PhD. “This is a difficult experiment, and exactly the type of challenge we’re proud to be working with patients and professionals to accomplish. We are thankful for the generosity of our donors for making this project possible.”
The Arthritis Foundation is working with the following partner organizations: Childhood Arthritis and Rheumatology Research Alliance (CARRA); the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN); Understanding Childhood Arthritis Network – Canadian/Dutch Collaboration (UCAN, CAN-DU); and the American College of Rheumatology (ACR). The Dartmouth Institute for Health Policy & Clinical Practice facilitates the group by providing strategic oversight and support for the RLHS.
Kids, teens, young adults and their families from across the country are landing in Minneapolis for the second of two National Juvenile Arthritis (JA) Conferences the Arthritis Foundation is hosting this year. This week’s conference offers a variety of events and informational program tracks focused on education and connecting with others, including two research sessions that will take place on Friday, August 2. Continue reading JAC Research Sessions
Arthritis patients have spoken: “We want safer, more effective, easier-to-use and less-painful-to-administer treatments that are less likely to cause potential long-term side effects. We need solutions to the challenges of dealing with comorbidities and multiple treatment changes.” Continue reading What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report
Last year we introduced you to Dr. Xiaojuan Li and her Osteoarthritis (OA) Center of Excellence demonstration research project. The project, “Multi-site Multi-Vendor Cross-validation of Cartilage T1rho and T2 imaging”, was completed by investigators from four sites: the Cleveland Clinic Foundation (CCF) in Ohio; the University of California, San Francisco; the University of Kentucky; and the Montefiore Hospital and Albert Einstein College of Medicine in New York. They worked to quantify biomarker assessments in cartilage images obtained through magnetic resonance imaging (MRI). Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Xiaojuan Li
A big part of our Collaborating With Patients for Better Health scientific initiative has been development of the Rheumatology Learning Health System (RLHS) in collaboration with some of our major partners. The goal of RLHS is to improve quality of care for pediatric and adult arthritis patients.
Continue reading Our Rheumatology Learning Health System Is Starting to Attract Attention!
The Food and Drug Administration (FDA) recently approved romosozumab (Evenity), a new drug for osteoporosis. Unlike osteoporosis medicines called bisphosphonates, romosozumab doesn’t just stop bone loss; it also helps build new bone. It’s approved for postmenopausal women who have fractures, are at very high risk for fractures or haven’t responded to other treatments. The drug comes with an FDA warning for an increased risk of heart attack, stroke and cardiovascular death. Continue reading FDA Approves New Bone-Building Drug for Osteoporosis
Dr. Andrea Knight, lead investigator, will present “Engaging Patients and Parents to Improve Mental Health for Youth With Rheumatologic Disease” at the 13th International Congress on Systemic Lupus Erythematosus in San Francisco, April 5-8. The results of this study will also appear in the April 2019 issue of Lupus Science & Medicine. Continue reading Improving Mental Health for Kids With Juvenile Arthritis