Tag Archives: ACR

OA Patient Guidelines

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

The editors ofArthritis Todaymagazine 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 torheumatic 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

根据她在ACR听到的一些研究,计划怀孕的风湿病患者会有更好的结果,所以山南希望其他像她这样的风湿性关节炎患者明白,与医生沟通和讨论计划生育是多么重要。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 ofArthritis Todaymagazine 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

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 Courtnayattended 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


The Problem of Sleeplessness
对于关节炎患者来说,疼痛会影响睡眠并不奇怪;研究表明,更显著的相关性是失眠加剧疼痛。密歇根大学的Anna Kratz博士和英国阿伯丁大学的Daniel Whibley博士在一个名为“不再数羊:循证睡眠管理”的会议上讨论了睡眠不足对关节炎患者的影响和治疗方法。(惠布利说,事实上,数羊入睡要比放松想象多花20分钟。)他讨论了昼夜节律在不同人的睡眠模式中的作用(“早起鸟”vs.“夜猫子”),以及夜间睡眠的结构(夜间醒来几次是正常的)。他还说,患有风湿病的人通常“睡眠效率”较差——他们醒着躺着的时间比其他人睡着的时间更长。睡眠不足会导致精神障碍以及疼痛和疲劳,有睡眠问题的人应该筛查其原因,比如阻塞性睡眠呼吸暂停或慢性失眠——这两种情况在关节炎患者中很常见——或阿片类药物或其他药物的副作用。

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 Crowattended this session on sleep, which shestated 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.



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

acr 2018

Patients Report on the Final ACR Conference Sessions

10月下旬,超过15000名医生、护士、物理治疗师、研究人员、科学家和其他对风湿病有兴趣和/或专业知识的人聚集在芝加哥,参加美国风湿病学会年会。The Arthritis Foundation had a contingent of “patient representatives” attending to provide the perspective and voice of peopleliving with arthritis. They fanned out to attend sessions, view and present posters and collect information about exciting new developments in the field. Here are their notes from the final sessions of the meeting.

Continue readingPatients Report on the Final ACR Conference Sessions

acr 2018

ACR 2018 Sessions Include Drug Pricing, OA Treatments, Diet as Therapy

The American College of Rheumatology (ACR) reports there were currently 15,000 attendees representing 106 countries at the 2018 Annual Meeting in Chicago and more than 3,000 abstracts on exhibit. Also on tap: session after session highlighting the newest research and filling in information gaps, and the Arthritis Foundation’s Patient Reps are hard at work going to them and reporting back with their findings and impressions.

Donna Dernier attended a session called “Mechanics of PBMs and Patient Access to Medications.” PBMs, which stands for Pharmacy Benefit Managers, are the groups that work between drug manufacturers andhealth insurance plans他们决定哪些药物在计划的处方中,它们将花费多少以及谁将获得。“他们完全不透明,权力很大,他们使用回扣和收费系统来设定价格。它们在很大程度上是不受监管的,”德尼尔说。由于医疗实践必须填写长而复杂的表格,“许多实践无法处理工作量,他们的病人失去了,”她说。Continue readingACR 2018 Sessions Include Drug Pricing, OA Treatments, Diet as Therapy

acr 2018

Patient Perspectives at the American College of Rheumatology Conference

“Patient perspective,” “patient-reported outcomes” and “shared decision making” are hot topics at theAmerican College of Rheumatology (ACR)2018 Annual Meeting in Chicago. In fact, many patients – including some of the Arthritis Foundation’s patient representatives – are attending the four-day event, which highlights rheumatology developments and draws medical professionals and researchers from around the world.

Donna Dernier, one of the Arthritis Foundation’s Patient Reps, reports that she ran into Hazel Breland, PhD, the incoming president of the Association of Rheumatology Health Professionals (AHRP), a division of the ACR. “She noticed my Patient Rep Sticker and stopped to say how glad she was to see patients involved with so many aspects of health care,” says Dernier.

Besides attending the conference, patients are getting involved in many ways. Four patients affiliated with the Arthritis Foundation exhibited posters during the Patient Perspectives Poster session on Sunday.

Continue readingPatient Perspectives at the American College of Rheumatology Conference

ACR Coverage: OA Management, Telehealth, Medical Marijuana and More

Our team of Patient Representatives and staff hit the ground running Monday to take in a range of sessions at the2017 Annual Meeting of the ACR/AHRP(Annual Meeting of the American College of Rheumatology/Association of Rheumatology Health Professionals).

Donna Dernier sat in on a session titled “Moving Toward Better Osteoarthritis Management.” In it, Kelli Allen, a research professor of medicine from the Thurston Arthritis Research Center at the University of North Carolina, Chapel Hill, said there is plenty of good evidence that certain behavioral therapies can work to better manage osteoarthritis (OA), but the message is getting lost in translation to the patient. Dernier reports, “The good news is there are agreed-upon strategies that work well toreduce painand increase mobility. These includeweight loss,better sleep patterns, judicious use of pain meds, increased exercise. Unfortunately, compliance isn’t always as high as doctors would like. Causes for this could be: non-shared decision making, a patient’s lack of confidence in the recommendation, or perhaps difficulty in actually getting to [physical therapy] sessions.”

Continue readingACR Coverage: OA Management, Telehealth, Medical Marijuana and More

acr patient voices 2017

Patients Weigh In on ACR Sessions

The2017 American College of Rheumatology’s (ACR)Annual Meeting (#ACR17) was in full swing Sunday in San Diego with health care professionals from all over the world in attendance, and the Arthritis Foundation had a cadre of Patient Representatives there to participate and report on what they saw and heard.

One session that received a lot of attention and praise from the Patient Reps was the Association of Rheumatology Health Professional (AHRP) keynote address titled “Exercise is Medicine: We All Need to Say the Same Thing.”

Continue readingPatients Weigh In on ACR Sessions

acr patient rep program 2017

Learn About the ACR Arthritis Foundation Patient Representative Program

越来越多的证据支持患者参与研究和医疗活动的价值。来自药物和设备开发、学术研究和其他医疗保健部门的案例研究指出,在研究、发现和交付计划的设计、实施和传播中,邀请专家患者合作伙伴的影响。在以患者为中心的结果研究所(PCORI)等实体的鼓励和促进下,学术和临床专业协会也开始采取更多的患者参与策略,比如在年度会议和科学会议上包括患者代表。In 2017, the Arthritis Foundation is partnering with the American College of Rheumatology (ACR) to pilot an Arthritis Foundation Patient Representative program (#AFPatientReps), bringing a cadre of ten highly involved, engaged patients to attend and participate in#ACR17, theACR/ARHP annual meeting.

Continue readingLearn About the ACR Arthritis Foundation Patient Representative Program

bing chang spotlight

Highlighting a Thought Leader: Bing Chang

关节炎基金会支持与关节炎的斗争,我们很高兴有思想领袖,如罗兰W. (Bing) Chang,医学博士,公共卫生硕士,作为这一斗争的伙伴。

Dr. Chang is a rheumatologist, epidemiologist and health services researcher. He was namedchair of the Arthritis Foundation’s board of directorsin November 2016.

Continue readingHighlighting a Thought Leader: Bing Chang