美国风湿病学会(ACR)年会最后一天的重点内容包括与COVID-19疫苗更新相关的主题，与微生物组对关节炎的影响有关的信息，以及弹性如何对关节炎管理产生影响。
Update on Coronavirus Vaccine Development
Pfizer announced Monday that its COVID-19 vaccine is performing well so far in trials. But a presentation Sunday described some of the uphill challenges in creating a safe and effective vaccine, which will likely be needed along with public health measures to end the COVID-19 pandemic. Dan Barouch, MD, a professor at Harvard and director of the Center for Vaccine and Virology Research at Beth Israel Deaconess Medical Center, outlined the steps in creating a vaccine and addressed some important issues.
- Barouch’s animal trials found some natural immunity to SARS-CoV-2, which may help explain why certain people have very mild or no symptoms.
- 从接种疫苗到产生免疫反应的时间因疫苗类型而异，但大多数人在两周内产生反应。对于需要加强注射的疫苗，可能在第一次接种后两周注射，完全见效的时间可能会延长到六周。
- Most currently circulating SARS-CoV-2 strains feature a mutation in the spike protein that makes them more contagious. The mutation does not cause more-severe disease or worse outcomes, and it will not affect the effectiveness of vaccines now in development. Although the coronavirus is mutating at a surprisingly slow rate — much more slowly than HIV, for example — it is possible that future mutations might make potential vaccines less effective. It is also possible that vaccines themselves might cause the virus to mutate in ways that would negate the vaccine entirely. (Genetic mutations in the virus are monitored by large sequencing consortiums around the world and uploaded into public databases for everyone to see.)
- 有几种不同的疫苗是很重要的，因为有可能发生突变，而且有些疫苗可能对某些人群更安全、更有效，包括老年人和有基础疾病的人。巴鲁克博士为强生公司(Johnson & Johnson)开发的疫苗尚未在免疫系统受损或患有风湿病的人群中进行测试，也只在少数老年人中进行了测试。目前尚不清楚这些群体是否包括在辉瑞生物科技公司(Pfizer-BioNTech)的试验中。该公司周一宣布，其候选疫苗预防COVID-19的有效性为90%。但是没有关于安全性或其他数据的报道。
- Distributing a vaccine to billions of people worldwide is much harder than creating the vaccine itself. (The Pfizer vaccine requires ultra-cold storage, which makes the logistics even more daunting). —LINDA RATH
New ACR Guidelines for Rheumatoid Arthritis
The ACR last issued evidence-based guidelines for the treatment of rheumatoid arthritis (RA) in 2015. Since then, new drugs have hit the market, older drugs have been reassessed and there is more evidence for the role of nondrug treatments. The ACR released a draft of its updated its RA recommendations, with input from both rheumatologists and patients.
Of 44 recommendations, only seven were considered strong, meaning there is clear
evidence that the benefits of the treatment outweigh the risks and they are endorsed by most patients. The remaining recommendations are conditional because they lack clear evidence one way or the other. The new guidelines do not address nondrug therapies or vaccinations.
Here are some of the main takeaways:
- Methotrexate alone (monotherapy) is strongly recommended as the first treatment of choice. It is strongly recommended over hydroxychloroquine, sulfasalazine, biologics and small molecule drugs such as janus kinase (JAK) inhibitors. Methotrexate monotherapy is also strongly recommended over methotrexate plus a tumor necrosis factor (TNF) blocker, and conditionally recommended over double or triple therapy with other conventional disease-modifying antirheumatic drugs (DMARDs).
- In an effort to greatly limit the use of corticosteroids (steroids), even as a bridge treatment, the guidelines strongly recommend against long-term steroid use and conditionally recommend against short-term steroid use.
- 医生和患者被鼓励转向生物仿制药——这些药物在安全性和有效性方面与名牌生物药相似，但有望降低成本。
- A treat-to-target approach is strongly recommended for patients who have not taken biologics or small molecule drugs (targeted DMARDs). In treat-to-target, doctors and patients decide on a goal and adjust treatment until the goal is reached. Though everyone hopes for remission, it might not be achievable for many patients. A more realistic aim is low disease activity, which keeps symptoms under control and helps maintain a good quality of life. Still, the goal should be tailored to each patient and remission should be the target when possible.
- Tapering off medications can be considered after six months of controlled symptoms. Dose reduction is preferred to stopping treatment completely. This is one area where doctors and patients strongly disagreed. Doctors want patients to stay on medications; patients want to get off them.
- 在所有的治疗考虑中，最重要的因素是共享决策，患者在自己的护理中有充分的发言权。—LINDA RATH
“Grit, Gratitude and Grace” in Resilience
为了分辨一个古老问题的细微差别，“是什么让一些人在面对逆境时比其他人更有韧性?”Afton L. Hassett，心理学博士。，在一次科学会议上考察了三个关键因素——勇气、感恩和优雅。哈塞特是密歇根大学慢性疼痛和疲劳研究中心麻醉系的副教授，也是背部疼痛中心临床疼痛研究的主任。
Grit, defined as perseverance and passion, is “a willingness to do whatever it takes to do something you love,” said Hassett. While grit has not been studied extensively in pain, there are some hints in research that key components of resilience — optimism and grit — were positively associated with greater pain tolerance and improved pain threshold, she said. “Another intriguing hint is in regard to one of the key elements of treatment for chronic pain, and that’s exercise. Grit was one of the best predictors of who would exercise longer,” said Hassett. Research revealed perseverance is the key ingredient for grit, and to build grit and perseverance, and researchers looked at changing mindsets in those with either a fixed or growth mindset — the latter allowing patients to grow perseverance and grit.
Gratitudehas a dual meaning: one that occurs in interpersonal exchanges, and the other recognized in spiritual traditions of giving thanks. Research shows that gratitude broadened patients’ outlook and altered patients’ behaviors and mindsets in positive directions, said Hassett. “When we are under the influence of positive emotions, they have profound impact on our bodies.”
“We see that positive emotions increase immune functioning, there’s a cardiovascular benefit, reduced risk of stroke and shorter and less episodes of depression.” —Afton Hassett
The body of evidence for the positive effects of gratitude is huge, said Hassett, including in the areas of acute and chronic pain, rheumatoid arthritis, osteoarthritis and back pain.
She suggested two effective ways to practice gratitude:
- 坚持写感恩日记。Every day write down three things for which you are grateful — family and friends, feeling sunshine on your face, being able to walk, for examples. Establishing a set time every day to do this works best. The three things must be different each time — no repeats. To help you feel grateful, smile as you write them down. In as much detail as you like, write why you are grateful for each thing. “The first day is usually easy,” said Hassett. “You may write down my family, my health, my pets. But by day 21, you really begin searching the world for things that make you happy — a beautiful fall leaf, the chocolate chips in that chocolate chip cookie. Whatever it is, it teaches you to look for these positive things in your life. And even better yet, look back on these things over time and spend a few minutes reflecting.”
- Send a gratitude text.给你关心的人发个短信表达感激之情，你有一段时间没和他说话了，他可能会享受感激的时刻。“发短信给他们，‘我一直在想你，我很感激……’他们做的一些事情，也许是你以前没有告诉他们的事情。通过发送一些感谢的信息，与人们重新联系，这真的可以让你的一天更充实。”
Grace, while often including the spiritual and humanity elements, Hassett is focused on the “purpose in life” element of grace — our passions and the reasons why we get up in the morning. It guides life decisions, influences behavior, shapes goal, offers a sense of direction and creates meaning, Hassett explained. This purpose can be associated with work and career or family, friends and community or religion and spirituality.
她说:“生活中有强烈的目标感是一剂良药。”科学证据表明，它与较少的焦虑和抑郁有关;健康老龄化;改善睡眠、饮食和营养;增加对疼痛的忍耐力和意志力;降低心脏病和老年痴呆症的风险;改善免疫系统功能。她说:“当人们有了使命感，小事情就不会那么难以应付和困难了。”
哈塞特建议通过一种锻炼来帮助找到目标。先问自己以下几个问题:
- What am I passionate about? It could be family, adventure, nature, love, compassion, justice, faith, wisdom, success, fun, etc. These are your values.
- 我的性格力量是什么?你是否天生具有创造力、好奇心、善良、勇敢、正直、关心他人、敢于冒险、富有工作室感、聪明等等?To help identify strengths, use this free character strength survey:org.
- What am I good at (skills and talents) or trained for? These are the roles in which you are already competent and most likely to succeed.
- 我怎么知道我是成功的?这些是你用来判断你的进步的指标。或者你死后人们会怎么说你?
Tied together — grit, gratitude and grace — all contribute to resilience, as demonstrated by Cassandra Metzger, a chronic pain patient who shared her diagnosis story and experiences, and how she has built resilience through meditation, breath work, yoga and yoga therapy (as both practitioner and certified therapist), movement and philosophy to cope and thrive. —BRYAN D. VARGO
The Influence of Diet on the Microbiome and Arthritis
每个人都有一个独特的微生物生态系统(称为微生物组)，受饮食、药物和经历的影响。反过来，我们体内和体内的微生物也会对健康产生深远的影响。炎症和自身免疫性疾病如类风湿关节炎(RA)的快速增加已被追踪到与不平衡的肠道微生物群相互作用的遗传因素。至少在过去的十年里，研究人员一直专注于恢复肠道微生物群平衡的最佳方法，以预防和治疗疾病。
Monica Guma, MD, a rheumatologist and researcher at the University of California, San Diego, undertook a simple two-week study to see if dietary changes could nudge the microbiome into a healthier state in patients with RA. She designed an anti-inflammatory, probiotic-rich eating plan based on Mediterranean-style diets.
Interesting findings emerged:
- Some patients saw a 50% improvement in pain and swelling from baseline by the second or third day. A few went into remission — a goal not easily reached by most people with arthritis.
- 并不是每个人都对这种饮食有反应。那些一开始就吃得更健康的人。这可能是因为两周的时间还不够长，对于基线饮食较差的无反应者来说，没有看到改善(或者他们可能没有很好地坚持饮食)。
- 肠道微生物的多样性没有发生显著变化，但趋势是向更大的多样性发展——这是肠道健康的标志。有反应者在基线时比无反应者有更多的微生物多样性。
Dr. Guma said her aim is to steer patients away from drugs and to think of food as medicine.
Curtis Huttenhower博士是公共卫生中心Howard Chan微生物组的负责人，他从人口和公共卫生的角度研究微生物组。他指出，肠道健康就是全身健康。不健康的微生物群会导致包括关节在内的全身炎症和疾病。他指出，与普通人群相比，大多数关节炎患者体内的抗炎微生物较少，而炎症微生物较多，而且每个人独特的微生物群会改变和处理膳食营养物质。这不是针对不同疾病的不同饮食，而是针对不同人群的不同饮食。—LINDA RATH
Mental Health Impacts on JIA
A growing number of studies show that children and teens with rheumatologic diseases have higher rates of mental health disorders, such as anxiety and depression, which was the topic of a presentation by Tamar Rubinstein, MD, of the Albert Einstein College of Medicine and Becky Lois, PhD, director of Pediatric Psychology for Integrated Behavioral Health at Hassenfeld Children’s Hospital, NYU Langone Health. In fact, an estimated 10% to 40% of youth with juvenile idiopathic arthritis (JIA) experience anxiety and depression, and rates of mental distress appear higher in children with arthritis than other children with chronic conditions. The COVID-19 pandemic has contributed even more to mental distress in children and parents of children with arthritis. Studies also find that children who experience anxiety and depression in childhood are more likely to develop mental health disorders as adults.
Mental health disorders can impact disease outcomes, and children who experience anxiety and depression are more likely to experience worse disease outcomes, increased pain, and lower quality of life. Moreover, children experiencing mental distress are less likely to comply with treatment plans and adhere to medications.
Factors that contribute to higher anxiety rates in children with arthritis include:
- Dealing with the emotional burden of having a chronic disease
- Increased risk of disability
- Medications (i.e, steroids, which may affect a child’s mood directly or indirectly by causing changes in appearance)
除了定期预约风湿病外，还需要进行更多的常规心理健康筛查，以消除抑郁和焦虑对疾病结果的影响。然而，2016年儿童关节炎和风湿病研究联盟(CARRA)的一项调查显示，只有2%的风湿病学家使用标准化工具定期筛查精神健康障碍。为了缩小风湿病护理和心理健康护理之间的差距，一些组织开始实施多学科项目，利用风湿病学家、护士和心理健康专业人员定期筛查儿童的焦虑和抑郁。初步研究结果显示，这些项目的影响对心理健康和疾病结局有积极的影响。—ROBYN ABREE
Improving Patient Education for Better Outcomes
患者教育和自我管理是改善健康结果的核心，但对医生和患者来说都存在障碍。三位演讲者在周一的会议上讨论了一些挑战和解决方案。
Self-management is an individual’s ability to manage symptoms and treatments as well as “physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition,” said Mwidimi Ndosi, PhD, a researcher and senior lecturer in rheumatology nursing at the University of the West of England, Bristol. According to the European League Against Rheumatism (EULAR), it’s a “planned, interactive learning process,” he said. “It’s more than just giving out leaflets.”
关键在于良好的沟通和共同决策。教育需要从了解疾病、副作用和风险因素，到了解可能影响疾病或症状的非药物治疗、疼痛控制、体育活动和行为，因此教育必须针对每个患者。
Health care providers cite time restraints as barriers to providing education and resources their patients need. Other barriers may be patients’ mistrust of providers and health care systems, lack of health literacy or language and cultural barriers, added Jillian A. Rose, PhD, director for community engagement, diversity and research at Hospital for Special Surgery (HSS).
A patient’s culture, religion and other factors may influence how they view their illness and how they and their family respond to it. And both providers and patients may bring implicit bias to their interactions based on culture, race, weight, sexual orientation and other considerations. This could unintentionally impact the examination, diagnosis interview, symptom management and treatment recommendations, Rose said.
Also important to consider are a patient’s economic stability, access to resources, stressors and other personal issues that can affect their disease management and health. In one survey, 40% of patients reported their family doctor was unaware of personal struggles, such as food insecurity, lack of transportation or inability to afford childcare for their multiple medical appointments, Rose said. She advises providers to actively listen to a patient with empathy, have open communication and make shared decisions based on what’s important to the patient.
She described one patient who was supposed to be receiving and taking a new biologic medication, but after several months she clearly wasn’t taking it. When gentle questioning revealed that she had lost her home so the medication wasn’t being delivered to her, Rose was able to help find other ways for her to get it, she said.
In addition to the patient, caregiver, support systems, doctor and health care team, peer support is key to better patient education and outcomes, Rose said. For example, HHS’s lupus program matches longer-term patients as mentors to newly diagnosed patients.
A collaborative approach among the health care team and organizational support — backed by patient and family advisory councils — can facilitate more effective patient education and better outcomes, added Sandra Mintz, RN, nurse navigator at Children’s Hospital Los Angeles with a background in rheumatology. Supporting self-management involves the whole care team as well as the patient and family, customizing education to each patient and making referrals to credible resources in the community and for information.
Technology can help in many ways. Telemedicine opens more access to health care providers, and there is endless information available online. However, Mintz said, many patients have little health literacy, and they need guidance on where to look for credible information and supportive patient groups and what to avoid. A few considerations for patients: Check for accuracy, authority, bias, timeliness and thoroughness on the site or app. Find out who runs it, what it’s offering, where does the information come from and when was it last reviewed, and why does the site exist.
从一开始，患者教育就必须成为治疗的一个组成部分，以帮助增强患者的能力，使他们有能力管理自己的疾病和症状。—JILL TYRER