Category Archives: Science

Exciting Research in Rheumatology

As one of the five Arthritis Foundation Rheumatology Research Fellowship grant awardees for 2020, I have been fortunate to have had many opportunities to participate in research. I was excited not only to attend the American College of Rheumatology (ACR) virtual conference in November but honored to present some of the research I have been working on during my fellowship at Duke University.Continue readingExciting Research in Rheumatology

Meet Our Newest Rheumatology Fellows

People living with arthritis rely on the special expertise of a rheumatologist. However, having access to one can be difficult due to a severe shortage across the country. The Arthritis Foundation has committed to helpclose the gap on the rheumatologist shortageby funding grants to universities in underserved areas, providing $150,000 to support new fellowship programs. Five schools were funded for three adult and two pediatric rheumatology fellowships, running from July 2020 to July 2021.Continue readingMeet Our Newest Rheumatology Fellows

Bringing Together the Best in Osteoarthritis Clinical Research

The Arthritis Foundation kicked off a new forum series focused on osteoarthritis (OA) clinical studies – OACS Virtual Forum Series & Conference – on June 17 with leading research experts across the globe who specialize in OA. The focus of these forums is to gather thought leaders in OA from the clinical research areas to discuss the future of how OA can be treated to improve patient outcomes. This inaugural program focused on the topic of “Does Strong Muscle Matter in OA?”, which can beviewed online here.Continue readingBringing Together the Best in Osteoarthritis Clinical Research

Pediatric Rheumatologists on the Front Lines of Mystery Illness Affecting Children

As your trusted source for information on thelatest arthritis news在COVID-19大流行期间,关节炎基金会致力于向您提供与我们社区相关的最新研究和信息。最近,一种被认为与新型冠状病毒有关的神秘疾病在儿童中出现。它与川崎病有相似之处,川崎病是一种会导致关节疼痛的风湿病。Continue readingPediatric Rheumatologists on the Front Lines of Mystery Illness Affecting Children

来认识一下朱莉·安·坎贝尔:我们最新的基金会赞助研究员之一!

来认识一下朱莉·安·坎贝尔:我们最新的基金会赞助研究员之一!

The Arthritis Foundation has been working to help close the gap on the nation’s rheumatologist shortage through ourfellowship initiative, because proper access to care is should be guaranteed. As one of the five new2020 fellowship grant西雅图儿童医院和华盛顿大学儿科风湿病奖学金项目宣布,他们的奖学金已授予朱莉·安·坎贝尔医生。Continue reading来认识一下朱莉·安·坎贝尔:我们最新的基金会赞助研究员之一!

New Pediatric Rheumatology Fellowships Announced

It’s a well-known fact that there is a shortage of rheumatologists in the U.S. Because of this severe shortage, seeing a rheumatologist often means traveling out of state. This problem is predicted to grow, with a projected shortfall of 3845 rheumatologists by 2025. The workplace shortage is particularly dire in pediatric rheumatology, where giant sections of the country still have no pediatric rheumatologist. The consequences are numerous and include delayed treatments and inadequate care.Continue readingNew Pediatric Rheumatology Fellowships Announced

arthritis a mandate for action

A Mandate for Action: New Arthritis Data Shows Gaps That Demand Action

Pain. Sleeplessness. Anxiety. Depression. Not getting your medical needs met.

Those are among the top things people with arthritis say they struggle with most. And the magnitude of those issues comes through loud and clear in “A Mandate for Action” — a new report spearheaded by the Arthritis Foundation that captures input from 18,000 responses to theongoing Live Yes! INSIGHTS assessment.

This continuous scientific study, which is patient-centered and patient-driven, is one of the nation’s largest studies of its kind. The results amplify the patient voice to influence — and change — the future of arthritis.

For the first time, patient input brings real-life data to the forefront, validating the individual experiences arthritis patients have shared anecdotally for years. Your stories have always reflected the issues you face; but the data being captured now underscores the real extent of those challenges in a way never done before.

“I think the results are what those living with arthritis knew,” according to comedian and Arthritis Foundation partner, Matt Iseman.

As this report shows, arthritis is a serious public health crisis, affecting at least 54 million Americans. And the toll of living with this complex disease, in its many forms, is astronomical.

arthritis

Ever-present arthritis pain leads to other problems. There’s constant fatigue and sleep disruption. 92% said pain interfered with their day-to-day activities. Two-thirds said it’s difficult to take part in family activities — and felt depressed and/or fearful andanxious.

arthritis depression

In addition, arthritis patients have difficulty doing their job.

arthritis work

arthritis work

Getting the health care you need as an arthritis patient is another major obstacle. Less than half of respondents to INSIGHTS were satisfied with their health care experience or felt they got the help they needed, especially among those with lower incomes.

arthritis finances

Clearly, despite advances in medicine, arthritis patients suffer from intense pain, are unable to engage in daily activities and don’t get what they need from our health care system. These ongoing findings are being shared with health care professionals, policymakers, corporations and other decision-makers — with our urgent mandate for action.

The findings aren’t surprising, but they are eye opening. As the CEO of a major medical device company that develops and markets treatments for arthritis has observed: “I thought I understood the impact that arthritis has on the lives of so many people. I did not. The impact of the data here cannot be underestimated,” shared Tony Bihl, CEO ofBioventus.

Besides validating the Arthritis Foundation’s work over the past seven decades, the data further supports our current initiatives and will guide us in the future — driving our national agenda while shaping improvements in the services provided in local communities.

“These are data a lot of us have experienced firsthand, but now we know we’re not alone. We know how many fellow Americans are facing these same challenges,” says Iseman.

Patients in all 50 states have weighed in, and no community is immune from the effects of arthritis, though the challenges vary widely from one community to another. Lower-income patients and minorities suffer most. As data collection continues, these rapidly growing facts and figures will gauge changes in communities nationwide, so we can drill down more deeply on the support needed locally — and find solutions.

关节炎基金会主席兼首席执行官Ann M. Palmer说:“关节炎患者的痛苦、困难、孤立和边缘化不能再被忽视了。”“这份报告让我们能够与地方和国家领导人分享患关节炎的真实影响。Arthritis patients are living a life of less, instead of living the life they deserve.”

Your voice counts. What you add is imperative to changing the future of arthritis.Participate now— it takes only 10 minutes. Continue to report what you’re going through, to help measure gaps and the progress being made. In the words of Matt Iseman, “It’s a time for us to take action, to make a difference.”

t2t

T2T: Treat To Target for Kids With Juvenile Idiopathic Arthritis

What is Treat to Target (T2T)?

Treat to Target is a name for one of the ways we take care of kids who have juvenile idiopathic arthritis (JIA) to get better results. T2T works by making providers, patients, and their care-givers partners in setting goals. The first step is when everyone on the team talks about treatment goals and personal goals. When everyone agrees on goals, they can work together to make a plan. This helps patients feel like they have more control. The hope is that patients will be more active and happy. Their disease can get better, the side effects from medicine can get better, and other sicknesses might be avoided or get better.

How is it Different from Usual Care?

Treat to Target is different from what most JIA patients, caregivers, and providers, are used to. In the past, providers were the ones making all of the decisions and patients mostly followed that plan. This way of doing things may feel new to JIA patients, but it’s already being used in other medical conditions, such as high blood pressure, diabetes, and adult arthritis – with great results!

What will Happen at My Appointments?

For many patients, inactive disease is the target. This means that there are no signs and symptoms of JIA (such as swollen joints, pain, or stiffness). For some patients, inactive disease is harder to reach, so they may set a goal of low disease activity (things like swelling, pain, and stiffness will happen less often and be easier to handle). In addition to deciding on a treatment target, more personal goals should be set, such as going to school more often, playing sports, or being creative.

When the patient visits the provider or care team, they will talk about how the patient is doing. They will then choose goals, or “targets”, together. Everyone on the team has a job while using T2T. Patients and caregivers must be honest about their needs and wants. They must also be honest with the provider or team about how well they are following their treatment plan, including taking their medicine. The care team must be able to listen to the patient about what is important to them. Together, they will come up with a plan to reach their target, and do their best to stick to the plan.

What Happens Next?

When following T2T, we want most patients to be 50% better within three months and reach their target within six months. Medical staff will keep track of how well the patient is doing at each appointment. If it seems like the patient is not “at target,” the team will work together to figure out why and come up with a new plan. This might mean changing the dose of medicine, how often they take the medicine, or even trying new medicine. If a patient reaches their target, they will talk to their provider about how long they should stay on the plan. Sometimes patients can take less medicine or stop taking it after they have been at their target for a while. It’s important to remember that there is no way to know if a patient’s disease will stay inactive or for how long. If the JIA comes back, the Treat to Target process will start again. Everyone will keep working hard – together – to make every JIA patient feel as well as they can!

Read more about JIAremission. Sign up for the生活是的!Online Communityand join the discussion on the JA Families forum to share and learn about remission and Treat to Target. It’s free!

Learn more about childhood arthritis, educational and social opportunities and other available resources through the生活是的!Arthritis Network.

T2t

T2T
©Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) https://pr-coin.org/