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.
Continue readingArthritis Today’s Snapshots from the ACR Meeting: Part 3
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 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
医生无法预测哪些类风湿性关节炎患者能够成功地减少或停止使用生物制剂。一组研究人员开始研究机器是否能做得更好。他们设计了一种计算机算法，使用真实世界的患者临床数据并分析变量，如生物剂量百分比变化、疾病活动、疾病持续时间和炎症标志物水平。他们发现，一台机器可以在逐渐减弱后学习预测耀斑，并且随着更多患者的临床数据的添加，它的性能有所提高。我们的目标是有朝一日为医生提供一种可靠的工具，指导他们减少用药。– MARCY O’KOON
Why Sky-High Biologic Prices?
一项研究发现，2012年至2016年间，美国在生物制品上的公共支出几乎翻了一番，主要原因是这些年来药品价格上涨，而不是更多的人能够获得它们。娜塔莉·麦考密克博士是哈佛医学院和麻省总医院的博士后研究员，她的团队分析了医疗保险(B部分和D部分)和医疗补助计划的数据。例如，在一项分析中，他们确定11种生物制剂的价格上涨占医疗保险D部分增加支出(经通货膨胀调整后)的56%(17亿美元)，相比之下，新用户的增加占37%(11亿美元)。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
尽管美国每年进行的髋关节和膝关节置换手术有近100万例的良好安全记录，但它们并非没有风险，包括感染。苏珊·古德曼医学博士是综合风湿病和骨科卓越中心主任，也是特殊外科医院联合关节炎项目的医疗主管，她提出的一项研究表明，类风湿关节炎(RA)患者比OA患者有更高的风险发展为假体关节感染。此外，RA患者术后处于危险状态的时间长于OA患者。古德曼博士列举了几个原因，包括使用免疫抑制剂等药物、患有活动性风湿性关节炎、患有残疾、植入物本身、吸烟以及对之前植入物的修改。– 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.
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
长期以来，人们一直不确定饮食是否会影响炎性关节炎的疾病活动度。两项研究提供了一些证据来证明这一点。在一项研究中，17名活动性类风湿关节炎(RA)患者(定义为至少三个疼痛和三个肿胀的关节)遵循了两周的抗炎饮食。在测量氧脂素、参与炎症、疼痛和其他细胞功能的分子之前、期间和之后的血液测试。这种饮食添加了姜黄、抗氧化剂、益生元和益生菌。它消除了促炎成分，如乳糖(在日记中发现的)、面筋和红肉，并提高了omega-3和omega-6脂肪酸的比例。研究发现，这些受试者有良好的饮食坚持。14天后，一系列疾病指标显著降低，测试显示与血液中羟脂素水平的变化有关。作者的结论是，饮食有可能补充药物治疗和改善风湿性关节炎患者的生活质量。–MARCY O’KOON
Depression and Resilience
炎症已被证明在抑郁症中起作用，但这是否使抑郁症成为炎症性疾病呢?不，安德鲁·米勒博士强调说，他是埃默里医学院精神科的研究员。抑郁症可能与炎症有关，而炎症是风湿性关节炎、银屑病关节炎和红斑狼疮等炎症疾病的核心，但在其他健康人群中与抑郁症无关。(用于治疗抑郁症炎症的生物制剂没有效果。)
在同一会议上，“风湿病中精神病学共病的机制和中介”，Afton Hassett，密歇根大学慢性疲劳和疼痛研究中心的心理学家和研究员，探索了韧性在关节炎和疼痛患者中的作用。风湿病患者往往比“健康”的人更消极，但积极的情绪——这是恢复力的关键——与更少的疼痛、更少的药物需求、更早出院和其他积极的结果有关。好消息是韧性是可以习得的。哈塞特描述了一些练习，包括以下三点:1)选择未来的一个时间点，比如从现在起1年或5年之后，想象自己是最好的自己，充分发挥自己的潜力，然后详细写下来。2)每天写下三件让你感激的事;随着时间的推移，你会意识到更小的事情值得欣赏。3)这周挑一天为别人做五件好事，为自己做一件好事。– 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
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
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。
良好的睡眠卫生(定期锻炼;保持卧室黑暗、安静;有规律的睡眠;关掉蓝光电子设备等)可以帮助很多人，但风湿病患者可能需要更多帮助。美国睡眠医学学会不建议使用睡眠药物，并建议将认知行为疗法(CBTi)作为治疗失眠的一线疗法。但是在美国，很难找到有资格进行CBTi训练的人。(Whibley和Kratz建议风湿病学实践中应该有人接受CBTi培训)“最重要的是作息规律，包括周末，”Whibley说。如果你睡不好，寻求帮助。“不要认为睡眠不好是造成这种情况的部分原因。”–JILL TYRER
Patient Partner Perspective: Cheryl Crowattended 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.
“与普通人相比，在患风湿病的人群中，失眠和阻塞性睡眠呼吸暂停更常见，37-50%的人有某种障碍。我完全不知道。让我想去做评估。” – Cheryl Crow
她看到房间里有这么多风湿病专业人员在问问题，以了解患者的观点，这让她很感动，表明患者的参与对于提供更好的患者护理至关重要。
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
关节炎基金会很自豪地与美国风湿病学会(ACR)合作，发布手部、膝盖和臀部骨关节炎(OA)的新指南。指南过程包括OA患者的输入，这是通过关节炎基金会和ACR合作伙伴关系实现的。
关节炎基金会科学战略高级副总裁盖伊·埃金(Guy Eakin)说:“传统上，随着指南的制定，患者的声音会被唤起，但并不总是存在。”“通过我们的合作，我们能够将ACR风湿病专业知识与Live Yes!患者社区开创了一个过程，确保治疗患者的指导方针反映了将接受他们的患者的独特观点。”
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 followingStrong Recommendations, for which there is strong evidence for benefits, clearly outweighing harms foralmost allOA patients:
The draft guidelines include the followingConditional Recommendations, for which there is less evidence that benefits may outweigh harms, fora majorityof OA patients:
Learn more byreading the paper containing完整的建议清单和支持证据。
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.
加入Live Yes!Arthritis Network FOR FREE.我们的社区在这里帮助你。
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 draftguidelines 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
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.
类固醇使用的讨论是一个热门话题，因为很多其他会议都关注这个问题，在这个小组中也被提及。专家组成员大多同意，在治疗过程中使用强的松是一个非常个性化的决定。在这一群体中，类固醇的使用建议在短时间内使用，通常只在等待其他干预措施生效时短期使用。
该小组还探讨了育龄患者和甲氨蝶呤的使用。有趣的是，对一名试图成家的男性开甲氨蝶呤的话题也进行了讨论，小组成员给出了不同的建议。众所周知，甲氨蝶呤禁忌用于计划怀孕的女性患者，但会开生物制剂。这是一个重要的话题，特别是在一个新诊断的患者，因为报销要求不同的处方药。
“As a patient, my takeaway from this session was the importance of being an informed patient.” – Shannan O’Hara-Levi
在专家组中，有人提到风湿病学家通常需要遵循一些特定的模型，然而，有人指出，患者之间存在差异，模型并不总是相符的。在我看来，这似乎是显而易见的，然而，由于保险问题，立法和成本驱动的干预，这是一个主要的患者和医生的担忧。治疗价格，尤其是对新诊断患者和有特定保险规定的患者来说，是治疗的一个驱动因素。
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
我们将回顾关节炎基金会病人伙伴在美国风湿病学会年会上的所有重点，所以请继续关注。查看其他ACR每日剂量博客，从患者的角度阅读更多信息。
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.
我们越能分享我们的故事，就越能帮助别人理解为什么耐心参与是如此重要。
“I’ve seen my story make a difference for researchers through the relationship that the Arthritis Foundation has with thePARTNERSlike CARRA & PR-COIN.” – Kate Kuhns
By: Corinne Pinter and Kate Kuhns
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:
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.
It’s been a busy time learning and listening so far for the Arthritis Foundation Patient Partners. Here’s a daily dose of what they are hearing about in all the latest research and treatments available for people with arthritis.
Raising awareness for our veterans and military service members with osteoarthritis is important to Patient Partner Nick Steen. He shared his story at a luncheon to highlight the importance of continued research, education and advocacy for helping those who serve our country and develop osteoarthritis.
“我女儿和我一起经历了关节炎。We are partners that tackle arthritis together.”
Not only does Nick live with OA, his daughter has juvenile idiopathic arthritis, so fighting arthritis means so much to him and his family.Read more about Nick’s journey here.
Patient Partner Raquel Masco attended a session on Pain, Anxiety & Depression. The session highlighted the need for taking a closer look at the mental health aspects of coping with inflammatory arthritis.
“It was very interesting to see the numbers on how companionship and good healthcare matter.”
I was especially interested in the information shared on Lupus and black women, as they discussed predictors of mortality for women like me. It’s so important to have resources for people to understand and navigate their disease.
By Raquel Masco
Family Planning, Pregnancy & Rheumatic Conditions
Patient Partner Mariah Leach ofMamas Facing Forwardhas been excited to have more information related to family planning, pregnancy and arthritis this year, so she can share the latest information with her support group. Here’s a summary of what Mariah has learned so far:
Contraception and Fertility: Dr. Mehret Birru Talabi
This session sought to recognize which contraceptives are safe and effective for women living with lupus. It also touched on fertility and appropriate assistive reproductive technologies for women with lupus.
Patients don’t expect their rheumatologists to be experts in contraception, but Dr. Talabi pointed out patients do want guidance from their rheumatologists on the best way to safely achieve their reproductive goals – whether that’s prevention or pregnancy.
Dr. Talabi emphasized that every woman with SLE can find effective and safe contraception. Based on my personal knowledge of how important pregnancy planning is when you are living with a chronic illness, I hope that doctors will feel encouraged to discuss this topic with their patients, and that patients will feel empowered to choose an effective form of contraception as part of their family planning.
Dr. Talabi shared that infertility isn’t common in women with SLE, but that if women with SLE do struggle with getting pregnant, assistive reproductive technologies are safe.
Medications in Pregnancy and Lactation: Dr. Bonnie Bermas
When a woman with lupus wants to become pregnant, Dr. Bermas stressed that the best outcomes for mother and baby are when pregnancies happen in a planned and controlled manner.
Dr. Bermas discussed which SLE medications are safe for use during pregnancy. In particular, she cited studies that show hydroxychloroquine (HCQ) actually improves SLE pregnancy outcomes. I think this type of data/knowledge is particularly important for doctors to have, to help patients overcome the pressure from society that it’s “always” better for the baby if women are unmedicated during pregnancy.
Honest and Accurate Conversations to Plan Lupus Pregnancies: Dr. Megan E Clowse
这个会议集中在医生如何采访他们的患者与狼疮怀孕问题。克洛斯博士分享了HOP-STEP(通过提供者教育对妊娠SLE的健康结果)计划，可以帮助医生进行这些重要的对话。
Dr. Clowse used videos to illustrate the importance of doctors asking their patients open-ended, encouraging questions. For example, if a patient is asked “you’re taking your birth control, right?” many patients may feel they have no choice but to answer yes even if they’d like to plan a pregnancy. Dr. Clowse recommended rephrasing this question as “do you have any plans to start a family in the next year?” which is open ended and gives the doctor a starting point for a pregnancy planning conversation if that’s what the patient wants.
The takeaway from this presentation was the importance of collaboration between doctor and patient when it comes to planning a pregnancy. Patients need to feel comfortable bringing up pregnancy and empowered to be involved in pregnancy planning. Doctors need to be open and non-adversarial, encouraging collaboration instead of simply telling patients what to do. If a woman with lupus is interested in pregnancy, the doctor and patient need to be on the same team with the joint goal of planning for the safest possible pregnancy.
By Mariah Z. Leach,Mamas Facing Forward
Cardiovascular Risk & RA
Patient Partner Cheryl Crow looks through two different lenses as she attends information sessions – a patient with RA and an occupational therapist. She knows the importance of physical activity in managing RA and the risks for cardiovascular diseases.
“得知你的疾病可能会影响你的寿命，总是让人有点害怕。有时这些信息让我觉得更有活力，充实地生活，有时又让我有点难过。我还能活多久才能看到我儿子长大成人?”
在一次关于心血管风险和RA的会议上，我了解到了一些有趣的事实。
It was interesting to learn that physical activity is important for RA not *just* from the joint health perspective (which I knew as an OT), but also from a cardiovascular health standpoint. This definitely made me feel more invigorated to incorporate more cardiovascular exercise into my daily routine – I used to do a lot of running and swing dancing but I’ve gotten out of the habit after having my son and having a few other issues like a car accident that led to whiplash and a concussion!
“If every (implied rheumatology) clinic could have a physical therapist within it, that would be the ideal” – pharmacist, Leticia A Shea PharmD. I agree with this but would just add that occupational therapy would be ideal to work not on exercise but on fatigue management and strategies to successfully complete meaningful activities of daily living (from walking the dog to cooking dinner).
By Cheryl Crow, OTR, Arthritis Life
Stay tuned for more highlights from the Arthritis Foundation Patient Partners as they learn more 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.
Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through ourfellowship initiative. The University of California, San Francisco (UCSF) recently announced the recipient of the Arthritis Foundation’s Charles F. and Marilyn Meier Pediatric Rheumatology Fellowship fund award. This award is specifically given to pediatric fellowship students at UCSF. The 2019-2020 award goes to William D. Soulsby, III, MD.Continue readingMeet Our Newest UCSF Fellow!
OurCollaborating With Patients for Better Healthscience initiative has been gettingmore attention. The National Health Council (NHC) has asked Arthritis Foundation Senior Vice President Guy Eakin, PhD, to speak to members of the Science of Patient Engagement Symposium Planning Committee about the challenges of helping patients learn to communicate with their health care providers and become partners in the decision making process to achieve personalized care management.Continue readingPersonalized Care Management to Achieve Outcomes Important to Patients
Developing new treatments for kids with arthritis is challenging. Drugs that work for adults may not work the same way in children. Ask any pediatrician and they will remind you that kids are not just small adults. Children are still growing and developing. They are different sizes and at different stages of development, which makes dosing and safety considerations more challenging. The types of additional medical conditions children experience may be very different from the conditions seen in adults.Continue readingDeveloping New Treatments for Kids With Arthritis
