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The impact of communicative and critical health literacy on trust in physicians among patients with systemic lupus erythematosus: the TRUMP2-SLE project 沟通和关键健康素养对系统性红斑狼疮患者对医生信任的影响:TRUMP2-SLE项目
Q2 Medicine Pub Date : 2022-05-16 DOI: 10.1101/2022.05.13.22275070
N. Oguro, N. Yajima, Y. Miyawaki, R. Yoshimi, Y. Shimojima, K. Sada, K. Hayashi, K. Shidahara, N. Sakurai, C. Hidekawa, D. Kishida, T. Ichikawa, Y. Ishikawa, N. Kurita
Objectives: Accessing the Internet has increased the gap in patient health literacy (HL), impacting patient-doctor trust. We examined how trust in physicians is affected by functional HL (the ability to read and write) and by broader concepts of HL, including communicative HL (the ability to extract information from communication to use) and critical HL (the ability to analyze and use information) among patients with systemic lupus erythematosus (SLE). Methods: This cross-sectional study enrolled 362 SLE patients at five academic centers between June 2020 and August 2021. The 14-item Functional Communicative Critical Health Literacy Scale assessed the three dimensions of HL (range: 1-4 points). Outcomes were trust in one's physician and physicians generally using the 5-item Wake Forest Physician Trust Scale (range: 0-100 points). General linear models adjusted for age, sex, education, income, disease activity, disease duration, depression, and time using the Internet. Results: Trust in one's physician increased with higher functional and communicative HL (per 1-pt increase, 3.21 [95%CI 0.61, 5.81], 5.8 [95%CI 1.96, 9.63]). Trust in physicians in general increased with higher communicative HL and decreased with higher critical HL (per 1-pt increase, 7.01 [95%CI 2.27, 11.76], -6.83 [95%CI -11.67, -1.99]). Longer Internet use was associated with both higher communicative and critical HL. Conclusions: Our findings suggest that rheumatologists can help patients build trust by encouraging dialogue about their health issues with their doctors and family members, rather than trying to improve their ability to discern health information.
目的:互联网的使用增加了患者健康素养(HL)的差距,影响了医患信任。我们研究了系统性红斑狼疮(SLE)患者对医生的信任如何受到功能性HL(读写能力)和更广泛的HL概念的影响,包括沟通性HL(从沟通中提取信息并使用的能力)和批判性HL(分析和使用信息的能力)。方法:这项横断面研究于2020年6月至2021年8月在5个学术中心招募了362名SLE患者。14项功能交际关键健康素养量表评估了HL的三个维度(范围:1-4分)。结果是对医生的信任,医生通常使用5项Wake Forest医生信任量表(范围:0-100分)。一般线性模型调整了年龄、性别、教育程度、收入、疾病活动、疾病持续时间、抑郁症和使用互联网的时间。结果:对医生的信任随HL功能和沟通能力的提高而增加(每增加1个百分点,3.21 [95%CI 0.61, 5.81], 5.8 [95%CI 1.96, 9.63])。总体而言,对医生的信任随着高沟通型HL的增加而增加,而随着高临界型HL的降低(每增加1个百分点,7.01 [95%CI 2.27, 11.76], -6.83 [95%CI -11.67, -1.99])。较长的互联网使用时间与较高的交际性和批判性HL相关。结论:我们的研究结果表明,风湿病学家可以通过鼓励与医生和家庭成员就他们的健康问题进行对话来帮助患者建立信任,而不是试图提高他们辨别健康信息的能力。
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引用次数: 1
Beyond Empowerment in Rheumatology Care 风湿病护理中的超越授权
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.220348
A. D. de Lara, I. Peláez-Ballestas
In this issue of The Journal of Rheumatology, Carluzzo et al1 explored different factors that contribute to the empowerment of individuals with arthritis. The study used data obtained from 12,560 US participants in the Live Yes! INSIGHTS program, based on sociodemographic information and patient-reported outcome measures (PROMs) about physical and mental health, emotional support, and empowerment.
在这一期的《风湿病学杂志》上,Carluzzo等人探索了不同的因素,这些因素有助于关节炎患者的赋权。这项研究使用了12560名美国参与者的数据,这些参与者参加了Live Yes!insight项目,基于社会人口统计信息和患者报告的关于身心健康、情感支持和赋权的结果测量(PROMs)。
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引用次数: 2
Some Key Issues Relating to the Reporting and Interpretation of Time-to-Event Data 与事件时间数据的报告和解释有关的一些关键问题
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.220053
I. M. Schou
Griffiths et al recently reported that in a cohort of Australian patients with ankylosing spondylitis included in the Optimising Patient outcomes in Australian RheumatoLogy (OPAL) dataset, the median persistence (persistence defined as the time to discontinuation of treatment) was longest for patients treated with golimumab (GOL) in all lines of therapy, and shortest for those treated with etanercept (ETN).1 In drawing this conclusion, the authors have overlooked some statistical aspects relating to the reporting of time-to-event data that make it difficult to evaluate the robustness of their conclusions.
Griffiths等人最近报道,在澳大利亚风湿病学优化患者结果(OPAL)数据集中纳入的澳大利亚强直性脊柱炎患者队列中,接受戈利木单抗(GOL)治疗的患者在所有治疗线中的中位持续时间(持续时间定义为停止治疗的时间)最长,接受依那西普(ETN)治疗的患者最短在得出这一结论时,作者忽略了与报告事件时间数据有关的一些统计方面,这使得很难评估其结论的稳健性。
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引用次数: 0
Personally Generated Quality of Life Outcomes in Adults With Juvenile Idiopathic Arthritis 青少年特发性关节炎成人患者个人产生的生活质量结果
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.211245
A. Tollisen, A. Selvaag, A. Aasland, T. Ingebrigtsen, J. Sagen, A. Lerdal, B. Flatø
Objective To explore quality of life (QOL) using the individualized Patient Generated Index (PGI) in young adults who were diagnosed with juvenile idiopathic arthritis (JIA) in childhood, and to examine associations between PGI ratings and standardized health-related outcome measures. Methods Patients (N = 79, mean age 25.1 [SD 4.2] yrs, 72% female) completed the PGI and the standardized measures: Health Assessment Questionnaire–Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL [HRQOL]), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analog scale for fatigue. Information on morning stiffness, medications, and demographics was also collected. Patients were compared to 79 matched controls. Results The most frequently nominated areas of importance for patients’ personally generated QOL (assessed by PGI) were physical activity (n = 38, 48%), work/school (n = 31, 39%), fatigue (n = 29, 37%) and self-image (n = 26, 33%). Nomination of physical activity was associated with older age, morning stiffness, and more pain interference. Nomination of fatigue was associated with current use of disease-modifying antirheumatic drugs, whereas nomination of self-image was associated with polyarticular course JIA and pain interference. Nomination of work/school was not associated with other factors. Higher PGI scores (indicating better QOL) correlated positively with all SF-12 subscales except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. Compared to controls, patients had more pain, poorer physical HRQOL, and less participation in full-time work or school. Conclusion Physical activity, work/school, fatigue, and self-image were frequently nominated areas affecting QOL in young adults with JIA. The PGI included aspects of QOL not covered in standardized measures.
目的应用个体化患者生成指数(PGI)探讨儿童期诊断为幼年特发性关节炎(JIA)的年轻人的生活质量(QOL),并探讨PGI评分与标准化健康相关转归指标之间的关系。方法79例患者(平均年龄25.1 [SD 4.2]岁,72%为女性)完成PGI和标准化测量:健康评估问卷-残疾指数、12项简短健康调查(SF-12);身心健康相关生活质量[HRQOL])、简短疼痛量表(疼痛严重程度和干扰)、五项霍普金斯症状检查表和疲劳视觉模拟量表。还收集了晨僵、药物和人口统计信息。将患者与79名匹配的对照组进行比较。结果对患者个人产生的生活质量(由PGI评估)影响最大的领域是体力活动(n = 38, 48%)、工作/学校(n = 31, 39%)、疲劳(n = 29, 37%)和自我形象(n = 26, 33%)。指定体育活动与老年、晨僵和更多疼痛干扰有关。疲劳的提名与目前使用的疾病改善抗风湿药物有关,而自我形象的提名与多关节病程JIA和疼痛干扰有关。工作/学校的提名与其他因素无关。较高的PGI分数(表明较好的生活质量)与SF-12除角色情绪外的所有分量表呈正相关,与残疾、疼痛严重程度、疼痛干扰和晨僵呈负相关。与对照组相比,患者有更多的疼痛,更差的身体HRQOL,更少参与全职工作或学校。结论体力活动、工作/学校、疲劳和自我形象是影响青年JIA患者生活质量的主要因素。PGI包括标准化测量中未涵盖的生活质量方面。
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引用次数: 2
Spondyloarthritis Among Patients With Uveitis: Can We Improve Referral Pathways? 葡萄膜炎患者的脊柱炎:我们能改善转诊途径吗?
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.220263
L. Eder
Delays in diagnosis remain a major gap in the care of patients with axial spondyloarthritis (axSpA). Despite efforts to improve awareness among family physicians and nonrheumatologist specialists, the average duration from onset of symptoms to diagnosis of axSpA is approximately 8 years,1 which is one of the longest in rheumatology. Such delays in diagnosis are associated with late initiation of therapy and worse disease outcomes.
诊断延迟仍然是轴性脊柱炎(axSpA)患者护理的主要差距。尽管努力提高家庭医生和非风湿病专家的认识,从出现症状到诊断axSpA的平均持续时间约为8年,这是风湿病学中最长的时间之一。这种诊断延误与治疗开始较晚和疾病预后较差有关。
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引用次数: 0
Impact of Axial Spondyloarthritis on Quality of Life: Results From the European Map of Axial Spondyloarthritis (EMAS) Study in France 中轴性脊柱炎对生活质量的影响:来自法国中轴性脊柱炎欧洲地图(EMAS)研究的结果
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.210864
J. Kędra, P. Claudepierre, R. Flipo, M. Garrido-Cumbrera, F. Alliot-Launois, E. Desfleurs, L. Grange, L. Gossec
The effect of axial spondyloarthritis (axSpA) on patients' quality of life (QOL) has been well assessed in terms of body structures and functions, but literature is scarce in terms of social interactions and activities, work, and fears related to social interactions or activities.1.
轴性脊柱炎(axSpA)对患者生活质量(QOL)的影响已经在身体结构和功能方面得到了很好的评估,但在社会交往和活动、工作以及与社会交往或活动相关的恐惧方面的文献很少。
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引用次数: 0
Vasculitis: What Have We Learned in the Last 50 Years? 血管炎:过去50年我们学到了什么?
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.220207
S. Carette
Realizing in the fall of 2021 that I had started medical school exactly 50 years ago, on September 7, 1971, I thought that it would be interesting for the 2022 Dunlop-Dottridge Lecture to briefly review what we knew about vasculitis prior to 1971 and then reflect on what we have learned since.
在2021年的秋天,我意识到我进入医学院正好是50年前,也就是1971年9月7日,我想,在2022年的邓洛普-多特里奇讲座上,简要回顾一下我们在1971年之前对血管炎的了解,然后反思一下我们从那以后学到的东西,这将是很有趣的。
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引用次数: 0
Management of Calcinosis Cutis in Rheumatic Diseases 风湿病患者皮肤钙质沉着症的治疗
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.211393
Hadiya Elahmar, B. Feldman, S. Johnson
Calcinosis (hydroxyapatite and calcium phosphate crystal deposition) within the extracellular matrix of the dermis and subcutaneous tissue is a frequent manifestation of adult and pediatric systemic autoimmune rheumatic diseases, specifically systemic sclerosis, dermatomyositis, mixed connective tissue disease, and systemic lupus erythematosus. In this article, we review classification of calcinosis, highlight mechanisms that may contribute to the pathogenesis of calcinosis, and summarize the evidence evaluating nonpharmacologic and pharmacologic interventions for the treatment of calcinosis.
真皮和皮下组织细胞外基质内钙沉着症(羟基磷灰石和磷酸钙结晶沉积)是成人和儿童系统性自身免疫性风湿病的常见表现,特别是系统性硬化症、皮肌炎、混合性结缔组织病和系统性红斑狼疮。本文综述了钙质沉着症的分类,重点介绍了钙质沉着症的发病机制,并总结了非药物和药物干预治疗钙质沉着症的证据。
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引用次数: 9
Dr. Griffiths et al reply Griffiths博士等人回答
Q2 Medicine Pub Date : 2022-05-15 DOI: 10.3899/jrheum.220120
J. Leadbetter, H. Griffiths
We thank Dr Schou for her insightful comments.1 The interpretation of data from an observational study such as this is complex, and the conclusions are by necessity less robust than in a randomized controlled trial.
我们感谢Schou博士富有洞察力的评论对此类观察性研究数据的解释是复杂的,结论必然不如随机对照试验可靠。
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引用次数: 0
Association of M2 Macrophages, Th2, and B Cells With Pathomechanism in Microscopic Polyangiitis Complicated by Interstitial Lung Disease M2巨噬细胞、Th2和B细胞与显微多血管炎合并间质性肺疾病的病理机制的关联
Q2 Medicine Pub Date : 2022-05-02 DOI: 10.3899/jrheum.220123
S. Matsuda, T. Kotani, H. Kuwabara, Takayasu Suzuka, Takao Kiboshi, Y. Wada, T. Ishida, Youhei Fujiki, Hideyuki Shiba, K. Hata, T. Shoda, Y. Hirose, T. Takeuchi
Objective To address the pathomechanism of microscopic polyangiitis (MPA) complicated by interstitial lung disease (ILD) using serum biomarker profile and pulmonary histopathology. Methods Serum biomarkers from patients with MPA-ILD (n = 32), MPA without ILD (n = 17), and healthy controls (n = 10) were examined. Based on the biomarker profiles, principal component analysis (PCA) and cluster analysis were performed to classify patients with MPA-ILD into subgroups. Clinical characteristics and prognosis were assessed for each subgroup. Two lung biopsies were examined following H&E staining and immunostaining. Results T cell and macrophage polarization was skewed toward the T helper (Th) 2 cells and M2 macrophages in the MPA-ILD group relative to that in MPA without ILD group. The PCA allowed classification of the 19 biomarker profiles into 3 groups: (1) B cell– and neutrophil-related cytokines, vascular angiogenesis-related factors, extracellular matrix-producing factors; (2) Th1-driven cytokines, M1 macrophage-driven cytokines, and Th2-driven cytokines; and (3) M2 macrophage-induced and driven cytokines. The cluster analysis stratified the patients with MPA-ILD into clinically fibrotic-dominant (CFD) and clinically inflammatory-dominant (CID) groups. Notably, severe infections were significantly higher in the CFD group than in the CID group. Immunohistochemical staining demonstrated intense CXC motif chemokine ligand 13 staining in B cells and Th2 cells in the interstitium of the lungs of patients with MPA-ILD. Conclusion. The activation of M2 macrophages, Th2 cells, and B cells plays a key role in the pathomechanism of MPA-ILD. Classification of MPA-ILD based on serum biomarker profile would be useful in predicting the disease activity and the complications of severe infection in MPA-ILD.
目的探讨显微多血管炎(MPA)并发间质性肺疾病(ILD)的病理机制。方法对MPA-ILD患者(n = 32)、MPA无ILD患者(n = 17)和健康对照(n = 10)的血清生物标志物进行检测。基于生物标志物特征,采用主成分分析(PCA)和聚类分析对MPA-ILD患者进行亚组分类。评估每个亚组的临床特征和预后。2例肺活检行H&E染色和免疫染色。结果MPA-ILD组的T细胞和巨噬细胞极化倾向于辅助性T (Th) 2细胞和M2巨噬细胞。PCA允许将19个生物标志物分为3组:(1)B细胞和中性粒细胞相关细胞因子,血管生成相关因子,细胞外基质生成因子;(2) th1驱动型细胞因子、M1巨噬细胞驱动型细胞因子、th2驱动型细胞因子;(3) M2巨噬细胞诱导和驱动的细胞因子。聚类分析将MPA-ILD患者分为临床纤维化优势组(CFD)和临床炎症优势组(CID)。值得注意的是,CFD组的严重感染明显高于CID组。免疫组化染色显示MPA-ILD患者肺间质B细胞和Th2细胞中强烈的CXC基序趋化因子配体13染色。结论。M2巨噬细胞、Th2细胞和B细胞的活化在MPA-ILD的发病机制中起关键作用。基于血清生物标志物的MPA-ILD分类将有助于预测MPA-ILD的疾病活动性和严重感染的并发症。
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引用次数: 1
期刊
The Journal of rheumatology. Supplement
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