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Prevalence and Outcomes of Gastrointestinal Manifestations in an Australian Scleroderma Cohort. 澳大利亚硬皮病队列中胃肠道表现的发病率和结果。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-08 DOI: 10.1002/acr.25426
Alannah Quinlivan, Dylan Hansen, Wendy Stevens, Laura Ross, Nava Ferdowsi, Susanna M Proudman, Jennifer G Walker, Joanne Sahhar, Gene-Siew Ngian, Diane Apostolopoulos, Lauren V Host, Gabor Major, Chamara Basnayake, Kathleen Morrisroe, Mandana Nikpour

Objective: The gastrointestinal tract (GIT) is the most commonly affected internal organ in systemic sclerosis (SSc). We sought to determine the prevalence and impact of GIT symptoms on survival and patient-reported outcomes.

Methods: A total of 907 consecutive patients from the Australian Scleroderma Cohort Study who had prospectively completed the University of California, Los Angeles, Scleroderma Clinical Trials Consortium Gastrointestinal Tract 2.0 Questionnaire (UCLA GIT) between 2015 and 2021 were included. The associations between UCLA GIT scores and physical function (Scleroderma Health Assessment Questionnaire), quality of life (QoL; Short Form 36), mood (Patient-Reported Outcomes Measurement Information System [PROMIS] anxiety and depression domains), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue score), and employment were investigated using multivariable population-averaged panel models using generalized estimating equations (GEEs). Kaplan-Meier curves and multivariable Cox proportional hazard regression models were used to evaluate survival according to total UCLA GIT scores.

Results: GIT symptoms were reported in 87% of participants, with 46% to 52% reporting moderate to very severe symptoms of reflux, distension, diarrhea, and constipation. Higher total UCLA GIT scores were associated with worse QoL, physical function, fatigue, anxiety, and depression (P < 0.001). In the multivariable GEE analysis, moderate and severe to very severe total scores, reflux scores, and distension scores were associated with worse physical function, QoL, fatigue, anxiety, and depression compared to mild scores (P < 0.05). Patients with severe total scores and diarrhea scores were more likely to be unemployed compared to those with mild scores (P < 0.05). UCLA GIT total scores were not independently associated with death in our cohort.

Conclusion: GIT manifestations are common in SSc and negatively impact QoL, physical function, and employment but are not directly associated with increased death.

目的:胃肠道(GIT)是系统性硬化症(SSc)中最常受影响的内脏器官。我们试图确定胃肠道症状的患病率及其对生存和患者报告结果的影响。方法:纳入了来自澳大利亚硬皮病队列研究(ASCS)的 907 名连续患者,这些患者在 2015 年至 2021 年期间前瞻性地完成了加州大学洛杉矶分校硬皮病临床试验联盟胃肠道 2.0 问卷(UCLA GIT)。使用广义估计方程(GEE)的多变量人群平均面板模型研究了 UCLA GIT 评分与身体功能(SHAQ)、QoL(SF-36)、情绪(PROMIS 焦虑和抑郁域)、疲劳(FACIT-疲劳评分)和就业之间的关联。根据 UCLA GIT 总分,使用 Kaplan-Meier 曲线和多变量 Cox 比例危险回归模型评估生存率:87%的参与者报告了胃肠道症状,其中46%至52%的参与者报告了中度至非常严重的反流、腹胀、腹泻和便秘症状。较高的 UCLA GIT 总分与较差的 QoL、身体机能、疲劳、焦虑和抑郁有关(p 结论:胃肠道表现在 SSc 中很常见,对 QoL、身体功能和就业有负面影响,但与死亡率的增加没有直接关系。
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引用次数: 0
The Impact of Pregnancy Readiness on Lupus Activity, Maternal Mental Health, and Pregnancy Outcomes. 妊娠准备对红斑狼疮活动、孕产妇心理健康和妊娠结果的影响。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-08 DOI: 10.1002/acr.25430
Ceshae C Harding, Amanda M Eudy, Cathrine A Sims, Cuoghi Edens, Mehret Birru Talabi, Rosalind Ramsey-Goldman, Laura Neil, Megan E B Clowse

Objective: Among individuals with systemic lupus erythematosus (SLE) who became pregnant, we explored the impact of medical readiness for pregnancy and personal readiness for pregnancy on the following aspects of maternal health: (1) provider-reported disease activity, (2) patient-perceived disease activity, (3) mood symptoms, (4) pregnancy-related health behaviors, and (5) pregnancy outcomes.

Methods: All study participants were enrolled in a prospective registry, met Systemic Lupus Collaborating Clinics (SLICC) criteria for SLE, and had at least one pregnancy. Patient-reported outcomes were collected at the first rheumatology visit during pregnancy. "Medically ready" for pregnancy was defined as (1) <1 g of proteinuria, (2) no rheumatic teratogens at conception, and (3) continuing pregnancy-compatible SLE medications after conception. "Personally ready" was defined as planned pregnancy based on a London Measure of Unplanned Pregnancy score ≥10. Multivariable logistic regression models estimated the association of pregnancy readiness with each outcome of interest.

Results: Among the 111 individuals enrolled, lack of medical readiness for pregnancy was associated with significantly higher rates of active disease and worse pregnancy outcomes; however, these patients did not perceive themselves as having higher disease activity. Lack of personal readiness for pregnancy was associated with significantly higher patient-perceived disease activity. Although medical readiness did not impact depressive symptoms substantially, lack of personal readiness for pregnancy was associated with much higher maternal depressive symptoms.

Conclusion: To improve pregnancy outcomes among individuals with SLE, greater focus is needed on improving medical optimization before conception. For maternal mental health and quality of life, greater focus is needed on decreasing the incidence of unplanned pregnancy.

目的:在怀孕的系统性红斑狼疮患者中,我们探讨了怀孕的医疗准备和个人准备对孕产妇健康以下方面的影响:(1)提供者报告的疾病活动;(2)患者感知的疾病活动;(3)情绪症状;(4)与怀孕相关的健康行为;以及(5)妊娠结局:方法:所有参与研究的人员都在前瞻性登记处登记,符合 SLICC 系统性红斑狼疮标准,并至少有一次妊娠。患者报告的妊娠结果是在妊娠期首次风湿病就诊时收集的。妊娠 "医学上已准备就绪 "的定义是:(1)结果:在登记的 111 名患者中,未做好怀孕的医疗准备与疾病活动率明显升高和妊娠结局恶化有关;但这些患者并不认为自己的疾病活动率升高。个人对怀孕准备不足与患者认为的疾病活动度明显升高有关。虽然医疗准备并不会对抑郁症状产生重大影响,但缺乏怀孕的个人准备却与孕产妇抑郁症状明显增加有关:结论:为了改善系统性红斑狼疮患者的妊娠结局,需要更加重视改善受孕前的医疗优化。结论:为了改善系统性红斑狼疮患者的妊娠结局,需要更加关注受孕前的医疗优化;为了提高孕产妇的心理健康和生活质量,需要更加关注降低意外妊娠的发生率。
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引用次数: 0
Effects of Social Vulnerability and Environmental Burden on Care Fragmentation and Social Needs Among Individuals With Rheumatic Conditions. 社会脆弱性和环境负担对风湿病患者护理分散和社交需求的影响。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-08 DOI: 10.1002/acr.25431
Leah Santacroce, Sherry Yang, Rebecca Summit, Ana Valle, Jamie E Collins, Paul F Dellaripa, Candace H Feldman

Objective: Environmental hazards and heightened neighborhood social vulnerability coexist and disproportionately affect minoritized populations. We investigated associations between exposure to adverse environmental burden concentrated in areas with high social vulnerability and care fragmentation (missed appointments, emergency department visits, and hospitalizations) and social needs (eg, food and housing insecurity) among individuals with rheumatic conditions.

Methods: We identified adults receiving care in a Massachusetts multihospital system with at least two rheumatic disease codes and complete street addresses. Geocoded addresses were linked to the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry Social-Environmental Ranking (SER), which combines census-tract social vulnerability variables (eg, socioeconomic status) with environmental hazards (eg, air and water pollution). Social needs were obtained from self-reported surveys. Multilevel, multinomial regression models estimated associations between SER quartiles and care fragmentation and social need burden, accounting for demographics and comorbidities.

Results: Among 16,856 individuals with rheumatic conditions, 70% were female, 6% were Black, 82% were White, and 7% resided in the highest combined social vulnerability and environmental burden (SER quartile 4) areas. Among 7,083 with social needs data, 19% experienced more than one challenge. Individuals in SER quartile 4 areas (vs quartile 1) had 2.02 (95% confidence interval [CI] 1.67-2.46) times greater odds of at least four care fragmentation occurrences (vs 0) and 2.37 (95% CI 1.73-3.25) times greater odds of at least two social needs (vs 0).

Conclusion: Residence in areas of high combined adverse environmental burden and social vulnerability was associated with significantly greater odds of care fragmentation and social needs. Addressing structural factors and emerging environmental threats contributing to these adverse exposures is essential to reduce rheumatic disease care inequities.

目标:环境危害和邻里社会脆弱性的加剧同时存在,对少数群体的影响尤为严重。我们调查了集中在社会脆弱性高的地区的不利环境负担与风湿病患者的护理分散(失约、急诊室就诊和住院)和社会需求(如食物和住房不安全)之间的关联:我们确定了在马萨诸塞州一家多医院系统接受治疗的成年人,他们的风湿病代码大于 2 个,并有完整的街道地址。地理编码地址与 CDC/ATSDR 社会环境排名 (SER) 相连,该排名结合了人口普查区社会脆弱性变量(如社会经济状况)和环境危害(如空气和水污染)。社会需求来自自我报告调查。多层次、多项式回归模型估计了 SER 四分位数、护理分散性和社会需求负担之间的关联,并考虑了人口统计学和合并症:在16856名风湿病患者中,70%为女性,6%为黑人,82%为白人,7%居住在社会脆弱性和环境负担最高的地区(SER四分位数4)。在有社会需求数据的 7083 人中,19% 的人遇到过大于 1 次的挑战。SER 四分位数 4 地区(与四分位数 1 相比)的个人出现 >4 次护理分散的几率是 0 的 2.02 倍(95% CI 1.67-2.46),出现 >2 次社会需求的几率是 0 的 2.37 倍(95% CI 1.73-3.25):结论:居住在综合不利环境负担和社会脆弱性较高的地区,发生护理分散和社会需求的几率明显更高。要减少风湿病护理不公平现象,就必须解决导致这些不良暴露的结构性因素和新出现的环境威胁。
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引用次数: 0
Prognostic Factors and Changes in Pain, Physical Functioning, and Participation in Patients With Hip and/or Knee Osteoarthritis: A Systematic Review. 髋关节和/或膝关节 OA 患者疼痛、身体功能和参与度变化的预后因素:系统综述。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-03 DOI: 10.1002/acr.25428
Bastiaan Cijs, Ruben Stekelenburg, Cindy Veenhof, Jesper Knoop, Tim Boymans, Mariëtte de Rooij, Corelien Kloek

Objective: This study aimed to systematically synthesize literature on prognostic factors of changes in either direction (ie, worsening or improvement) in pain, physical functioning, and participation in patients with knee and/or hip osteoarthritis (OA).

Methods: Studies included in two preceding reviews underwent full-text screening for inclusion in the current review. Additionally, an extensive literature search was conducted in five databases. Title/abstract screening was performed using an active learning program. Inclusion criteria comprised patients diagnosed with knee and/or hip OA, with the dependent variable assessing pain, physical functioning, or participation. Potential associated prognostic factors were measured as independent variables. The methodologic quality of studies was assessed with the Hayden criteria.

Results: A total of 31 studies were included in this systematic review. In patients with knee OA, pain worsening was associated with lower physical functioning (strong evidence) and with higher body mass index, ethnicity, and a higher comorbidity count (moderate evidence). Also, in patients with knee OA, pain improvement was associated with less pain at baseline (moderate evidence). In patients with knee and/or hip OA, worsening of physical functioning exhibited associations with higher body mass index, more pain, more hip pain, a higher comorbidity count, higher avoidance of activities (strong evidence), and ethnicity (moderate evidence). In patients with knee OA, improvement in physical functioning showed an association with higher vitality (moderate evidence). Regarding the remaining prognostic factors, there is weak, inconclusive, or inconsistent evidence for an association with the outcomes. In patients with hip OA, only weak evidence was found for three factors predicting a change in physical functioning.

Conclusion: This review encompasses prognostic factors associated with changes in either direction (ie, worsening or improvement) in pain, physical functioning, and participation. The results are consistent with other reviews. Future research should place a stronger emphasis on patients with hip OA and participation as an outcome.

研究目的本研究旨在系统综合有关膝关节和/或髋关节 OA 患者疼痛、身体功能和参与度任一方向变化(即恶化或改善)的预后因素的文献:方法:对前两篇综述中的研究进行全文筛选,以纳入本次综述。此外,还在五个数据库中进行了广泛的文献检索。标题/摘要筛选采用主动学习程序进行。纳入标准包括确诊为膝关节和/或髋关节OA的患者,因变量为疼痛、身体功能或参与度。潜在的相关预后因素作为自变量进行测量。研究的方法学质量按照海登标准进行评估:本系统综述共纳入 31 项研究。在膝关节 OA 患者中,疼痛恶化与较低的身体功能相关(强证据),与较高的体重指数、种族和较高的合并症计数相关(中等证据)。同样,膝关节 OA 患者的疼痛改善与基线疼痛减轻有关(中等证据)。在膝关节和/或髋关节 OA 患者中,身体机能的恶化与较高的体重指数、较多的疼痛、较多的髋关节疼痛、较高的合并症数量、较多的回避活动(强证据)和种族(中等证据)有关。在膝关节 OA 患者中,身体机能的改善与活力的提高有关(中等证据)。至于其余的预后因素,与结果相关的证据不足、不确定或不一致。在髋关节OA患者中,只有三项预测身体机能变化的因素证据不足:本综述涵盖了与疼痛、身体功能和参与度的任一方向变化(即恶化或改善)相关的预后因素。结果与其他综述一致。未来的研究应更加重视髋关节OA患者,并将参与作为一项结果。
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引用次数: 0
Returning Incidental Research Findings From 18F-Fluorodeoxyglucose-Positron Emission Tomography/Computed Tomography to Participants: A Survey of Investigators From a Clinical Trial of Rheumatoid Arthritis. 将 FDG PET/CT 意外研究结果退还给参与者:类风湿关节炎临床试验研究者调查。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-03 DOI: 10.1002/acr.25424
Jane S Kang, Howard F Andrews, Jon T Giles, Katherine P Liao, Daniel H Solomon, Joan M Bathon

Objective: There are limited data on researchers' attitudes and beliefs on returning and managing incidental research findings from whole body 18F-fluorodeoxyglucose-positron emission tomography/computed tomography (FDG PET/CT) imaging.

Methods: Site principal investigators (PIs) who enrolled participants for the Treatments Against Rheumatoid Arthritis and Effect on FDG PET/CT (TARGET) trial were surveyed.

Results: Of the 28 TARGET site PIs eligible for the study, 18 consented to participate (response rate: 64%). Many site PIs returned incidental findings to participants (61%), and the most common finding that was returned was serious (but not life-threatening) and treatable (54.5%). More than half of the investigators believed that adequacy of clinical follow up (58.8%) and legal liability if incidental findings are not disclosed (55.6%) were extremely important factors in returning incidental research findings from whole body FDG PET/CT. All investigators felt very obligated to return incidental research findings if scans revealed a treatable, high-risk medical condition. Most investigators felt very obligated to disclose incidental findings with important health implications (94.4%), for which proven preventive or therapeutic interventions exist (77.8%), that provide early detection of a health problem (72.2%), if participants ask for their incidental findings (72.2%), and if scans have established validity for a particular medical condition (61.1%).

Conclusion: Although it is recommended that researchers report and manage incidental research findings, our data show differing views and uncertainties on what and how to return, and the extent of follow up needed to manage, incidental findings from whole body FDG PET/CT; this highlights the need for more specific and standardized guidance.

目的:关于研究人员对归还和管理全身 18F 氟脱氧葡萄糖正电子发射断层扫描/CT(FDG PET/CT)成像的偶然研究结果的态度和信念的数据有限:方法:对参与 "抗 RA 治疗及对 FDG PET/CT 的影响"(TARGET)试验的研究机构主要研究人员(PI)进行了调查:在符合研究条件的 28 个 TARGET 研究机构的首席研究员中,有 18 位同意参与研究(回复率:64%)。许多研究机构的首席研究员向参与者反馈了偶然发现(61%),最常见的发现是严重的(但不危及生命)和可治疗的(54.5%)。半数以上的研究人员认为,临床随访是否充分(58.8%)以及如果不披露附带发现的法律责任(55.6%)是退还全身 FDG PET/CT 附带研究发现的极其重要的因素。如果扫描发现了可治疗的高风险病症,所有调查人员都认为有很大责任退回附带研究结果。大多数研究人员认为非常有义务披露对健康有重要影响的附带研究结果(94.4%)、已被证实有预防或治疗干预措施的附带研究结果(77.8%)、能早期发现健康问题的附带研究结果(72.2%)、参与者要求提供附带研究结果的附带研究结果(72.2%)以及扫描结果对特定医疗状况有效的附带研究结果(61.1%):虽然建议研究人员报告和管理附带研究结果,但我们的数据显示,对于全身 FDG PET/CT 附带研究结果的回报内容、回报方式以及管理所需的随访程度,存在不同的观点和不确定性;这突出表明需要更具体和标准化的指导。
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引用次数: 0
Environment, Lifestyles, and Climate Change: The Many Nongenetic Contributors to The Long and Winding Road to Autoimmune Diseases. 环境、生活方式和气候变化:通往自身免疫性疾病的漫长而曲折的道路》中的许多非遗传因素。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-03 DOI: 10.1002/acr.25423
Frederick W Miller

A critical unanswered question is what is causing the increase in the prevalence of autoimmunity and autoimmune diseases around the world. Given the rapidity of change, this is likely the result of major recent alterations in our exposures to environmental risk factors for these diseases. More evidence is becoming available that the evolution of autoimmune disease, years or even decades in the making, results from multiple exposures that alter susceptible genomes and immune systems over time. Exposures during sensitive phases in key developmental or hormonal periods may set the stage for the effects of later exposures. It is likely that synergistic and additive impacts of exposure mixtures result in chronic low-level inflammation. This inflammation may eventually pass thresholds that lead to immune system activation and autoimmunity, and with further molecular and pathologic changes, the complete clinical syndrome emerges. Much work remains to be done to define the mechanisms and risk and protective factors for autoimmune conditions. However, evidence points to a variety of pollutants, xenobiotics, infections, occupational exposures, medications, smoking, psychosocial stressors, changes in diet, obesity, exercise, and sleep patterns, as well as climate change impacts of increased heat, storms, floods, wildfires, droughts, UV radiation, malnutrition, and changing infections, as possible contributors. Substantial investments in defining the role of causal factors, in whom and when their effects are most important, the necessary and sufficient gene-environment interactions, improved diagnostics and therapies, and preventive strategies are needed now to limit the many negative personal, societal, and financial impacts that will otherwise occur.

一个悬而未决的关键问题是,是什么导致了自身免疫和自身免疫性疾病在全球的发病率上升。鉴于变化之快,这很可能是我们最近接触这些疾病的环境风险因素发生重大变化的结果。越来越多的证据表明,自身免疫性疾病在数年甚至数十年的演变过程中,是由多种暴露因素长期改变易感基因组和免疫系统造成的。在关键发育期或荷尔蒙分泌期的敏感阶段进行暴露,可能会为以后的暴露影响埋下伏笔。暴露混合物的协同和叠加影响很可能导致慢性低水平炎症。这种炎症最终可能会超过阈值,导致免疫系统激活和自身免疫,随着分子和病理变化的进一步发展,出现完整的临床综合征。要确定自身免疫疾病的机制、风险和保护因素,还有许多工作要做。不过,有证据表明,各种污染物、异种生物、感染、职业暴露、药物、吸烟、社会心理压力、饮食、肥胖、运动和睡眠模式的改变,以及气候变化对高温、风暴、洪水、野火、干旱、紫外线辐射、营养不良和不断变化的感染的影响,都是可能的诱因。现在需要投入大量资金来确定致病因素的作用、对哪些人和何时产生最重要的影响、必要和充分的基因-环境相互作用、改进的诊断和治疗方法以及预防策略,以限制否则会对个人、社会和经济造成的许多负面影响。
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引用次数: 0
Comparison of Three Physician Global Assessment Instruments in Systemic Sclerosis. 系统性硬化症三种医生总体评估工具的比较。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-03 DOI: 10.1002/acr.25427
Laura Ross, Dylan Hansen, Susanna Proudman, Jennifer Walker, Kimti Kumar, Wendy Stevens, Nava Ferdowsi, Joanne Sahhar, Gene-Siew Ngian, Diane Apostolopoulos, Lauren V Host, Kathleen Morrisroe, Gabor Major, Murray Baron, Mandana Nikpour

Objective: Physician global assessments (PhyGAs) are variably applied in systemic sclerosis (SSc) clinical trials. The comparability of different PhyGA results is unknown. We sought to assess the comparability of results from three different PhyGA instruments simultaneously applied in the Australian Scleroderma Cohort Study (ASCS).

Methods: Using data from 1,965 ASCS participants, we assessed the correlation between results of three PhyGA assessments: (1) overall health, (2) activity, and (3) damage. We evaluated the concordance of change in each PhyGA between study visits. Ordered logistic regression analysis was used to evaluate the clinical associations of each PhyGA.

Results: The absolute scores of each PhyGA were strongly correlated at individual study visits. Concordant changes of the PhyGA scores occurred between 50% of study visits. Only patient-reported breathlessness was associated with all three PhyGA scores (overall health: odds ratio [OR] 1.67, P < 0.01; activity: OR 1.44, P < 0.01; damage: OR 1.32, P < 0.01). Changes in physician-assessed activity scores were also associated with patient-reported worsening skin disease (OR 1.25, P = 0.03) and fecal incontinence (OR 1.23, P = 0.01), whereas damage scores were associated with respiratory disease (pulmonary arterial hypertension: OR 1.25, P = 0.03; chronic obstructive pulmonary disease: OR 1.37, P = 0.04), as well as skin scores (OR 1.02, P < 0.01) and fecal incontinence (OR 1.21, P = 0.02).

Conclusion: PhyGAs of overall health, activity, and damage are each associated with different SSc features, and changes in different PhyGA scores are discordant 50% of the time. Our findings suggest results of variably worded PhyGAs are not directly interchangeable and support the development of a standardized PhyGA.

目的:在系统性硬化症(SSc)临床试验中,医生全局评估(PhyGA)的应用各不相同。不同 PhyGA 结果的可比性尚不清楚。我们试图评估同时应用于澳大利亚硬皮病队列研究(ASCS)的三种不同 PhyGA 工具得出的结果的可比性:方法:我们利用 1,965 名 ASCS 参与者的数据,评估了三种 PhyGA 评估结果之间的相关性:(1) 整体健康;(2) 活动;(3) 损伤。我们还评估了研究访问期间每项 PhyGA 变化的一致性。我们使用有序逻辑回归分析来评估每项PhyGA的临床关联性:结果:在各次检查中,每个 PhyGA 的绝对得分都有很强的相关性。50%的研究访问中,PhyGA评分出现了一致的变化。只有患者报告的呼吸困难与所有三项 PhyGA 评分相关(总体健康:OR 1.67,P<0.05):OR 1.67,p结论:医生对总体健康、活动和损害的全面评估与不同的 SSc 特征相关,不同 PhyGA 评分的变化在 50% 的时间内不一致。我们的研究结果表明,不同措辞的PhyGAs结果不能直接互换,因此支持开发标准化的PhyGA。
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引用次数: 0
Pregnancy Outcomes from a Multidisciplinary Obstetric-Medicine/Rheumatology Clinic in the United States: A Five-Year Retrospective Analysis. 美国一家多学科产科/风湿病诊所的妊娠结果:五年回顾性分析
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-09-03 DOI: 10.1002/acr.25425
Griffin Reed, Mery Deeb, Joyce Mathew, Kelsey Rigby, Elena Cravens, Christina Raker, Shadi Jafari-Esfahani, Anthony M Reginato, Gofran Tarabulsi, Joanne S Cunha

Objective: At Women & Infants Hospital in Providence, Rhode Island, the Specialty Care in Pregnancy clinic combines obstetric-medicine internists with rheumatologists to care for pregnant patients with rheumatologic conditions. These clinics are scarce, with only three known similar clinics in the United States. This study aims to characterize the population cared for in this clinic, identify interventions, and analyze pregnancy outcomes for the birthing parents and newborns.

Methods: A five-year retrospective chart review was performed from January 1st, 2016, through December 31st, 2021.

Results: Of 81 patients, 62% had a clinically diagnosed rheumatic disorder. Of 87 patient visits, which included preconception, prenatal, and postpartum encounters, 54% of patients were taking conventional synthetic disease modifying antirheumatic drugs, and 17% were taking biologic disease modifying antirheumatic drugs. New medications were started in 52% of patients. A total of 52% of pregnancies resulted in live births, with 2% resulting in miscarriages. Prematurity occurred in 19% of newborns, and 9% had intrauterine growth restriction.

Conclusion: Our study illustrates the benefits of multidisciplinary care in patients with rheumatologic disorders during their prenatal and perinatal periods. The expertise from both the obstetric-medicine internists and rheumatologists was critical in making complex decisions that weighed the benefits of therapy against potential risks for the fetus. Our multidisciplinary approach resulted in doubling of the number of patients initiating disease modifying therapy and increased prophylaxis with hydroxychloroquine and/or aspirin therapy, as recommended by current guidelines. Additional multidisciplinary clinics of this type would help coordinate care among physicians who frequently treat these high-risk, unique patients and open the door for more research of this understudied population.

目标:在罗德岛普罗维登斯的妇女与婴儿医院,妊娠期专科护理诊所将产科内科医生与风湿病学家联合起来,为患有风湿病的孕妇提供护理服务。这类诊所非常稀缺,在美国已知的类似诊所只有三家。本研究旨在了解该诊所护理人群的特点,确定干预措施,并分析母亲和新生儿的妊娠结局:方法:从 2016 年 1 月 1 日到 2021 年 12 月 31 日,进行了为期五年的回顾性病历审查:81名患者中,62%患有临床诊断的风湿性疾病。在 87 次就诊(包括孕前、产前和产后就诊)中,54% 的患者正在服用传统合成的改善病情抗风湿药物,17% 的患者正在服用生物改善病情抗风湿药物。52%的患者开始服用新药。52%的妊娠为活产,2%为流产。19%的新生儿出现早产,9%的新生儿出现宫内生长受限:我们的研究说明了多学科护理对产前和围产期风湿病患者的益处。产科内科医生和风湿免疫科医生的专业知识对于做出复杂的决定至关重要,他们需要权衡治疗的益处和对胎儿的潜在风险。我们的多学科方法使接受疾病调整疗法的患者人数翻了一番,并根据现行指南的建议,增加了羟氯喹和/或阿司匹林的预防治疗。更多此类多学科诊所将有助于协调经常治疗这些高风险、特殊患者的医生之间的护理工作,并为对这一研究不足的人群进行更多研究打开大门。
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引用次数: 0
Therapeutic Hydroxychloroquine Blood Levels Are Associated With Fewer Hospitalizations and Possible Reduction of Health Disparities in Lupus. 治疗性羟氯喹血药浓度与红斑狼疮住院率降低有关,并可减少红斑狼疮的健康差异。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-08-26 DOI: 10.1002/acr.25422
Shivani Garg, Brad C Astor, Callie Saric, Giancarlo Valiente, Lexie Kolton, Betty Chewning, Christie M Bartels

Objective: Nonadherence to receiving hydroxychloroquine (HCQ) is associated with a three-fold higher risk of lupus-related hospitalization. Monitoring HCQ blood levels could improve adherence to receiving HCQ and efficacy. Yet, HCQ level monitoring is not routinely done partially due to cost and coverage concerns. To establish HCQ level monitoring cost-effectiveness, we reported the following: (1) risk of acute care by HCQ blood levels, and (2) cost of HCQ monitoring versus acute care visits.

Methods: HCQ blood levels were measured during routine lupus visits. HCQ levels were categorized as follows: (1) subtherapeutic (<750 ng/mL), (2) therapeutic (750-1,200 ng/mL), or (3) supratherapeutic (>1,200 ng/mL). All lupus-related acute care visits (emergency room visits/hospitalizations) after the index clinic visit until next follow-up were abstracted. In our primary analysis, we examined associations between HCQ levels and time to first acute care visit in all patients and subgroups with higher rates of acute care.

Results: A total of 39 lupus-related acute care visits were observed in 181 patients. Therapeutic HCQ blood levels were associated with 66% lower rates of acute care. In our cohort, two groups, Black or Hispanic patients and those with public insurance, faced three to four times higher rates of acute care. Levels within 750 to 1,200 ng/mL were associated with 95% lower rates of acute care use in subgroups with higher acute care use.

Conclusion: HCQ blood levels within 750 to 1,200 ng/mL are associated with lower rates of acute care in all patients with lupus, including groups with higher rates of acute care. Future clinical trials should establish the causal association between HCQ level monitoring and acute care in patients with lupus.

背景:不坚持使用羟氯喹(HCQ)会导致狼疮相关住院风险增加 3 倍。监测HCQ血药浓度可提高依从性和疗效。然而,部分由于成本和覆盖面的原因,HCQ水平监测并没有常规化。为确定 HCQ 水平监测的成本效益,我们报告了以下几点方法:在狼疮常规就诊期间测量 HCQ 血液水平。HCQ水平可分为:a)亚治疗水平(1200纳克/毫升);b)治疗水平(100纳克/毫升);c)治疗水平(100纳克/毫升)。我们还摘录了所有与狼疮相关的急性就诊病例(急诊室就诊/住院),这些病例都是在就诊后至下次随访前就诊的。在主要分析中,我们研究了所有患者和急诊就诊率较高的亚组的 HCQ 水平与首次急诊就诊时间之间的关系:结果:在181名患者中,共观察到39次与狼疮相关的急诊就诊。治疗性HCQ血药浓度与急诊就诊率降低66%有关。在我们的队列中,黑人或西班牙裔人以及有公共保险的人这两类人的急诊就诊率要高出3-4倍。在急症护理使用率较高的亚组中,HCQ血药浓度在750-1200纳克/毫升范围内与急症护理使用率降低95%相关:结论:HCQ血药浓度在750-1200纳克/毫升范围内与所有红斑狼疮患者(包括急性护理使用率较高的群体)的急性护理使用率降低有关。未来的临床试验应确定红斑狼疮患者的HCQ水平监测与急性护理使用之间的因果关系。
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引用次数: 0
Training to Increase Minority Enrollment in Lupus Clinical Trials With Community Engagement: Enhancing Lupus Clinical Trial Recruitment Through Provider and Community Health Worker Engagement. 通过社区参与提高红斑狼疮临床试验中少数族裔入组人数的培训(TIMELY):通过医疗服务提供者和社区卫生工作者的参与加强红斑狼疮临床试验的招募。
IF 3.7 2区 医学 Q1 RHEUMATOLOGY Pub Date : 2024-08-23 DOI: 10.1002/acr.25419
Saira Z Sheikh, Tessa Englund, Andrew Simkus, Nicole Wanty, Annie McNeill, Kristen Holtz, Tenesha Hood, Starla Blanks, Maria Allen, Katherine Holben, Allen Anandarajah

Objective: This study evaluates the effectiveness of the Training to Increase Minority Enrollment in Lupus Clinical Trials with Community Engagement (TIMELY) program on enhancing referrals of underrepresented patients to lupus clinical trials. TIMELY leverages two existing American College of Rheumatology online educational initiatives: Materials to Increase Minority Involvement in Clinical Trials (MIMICT), a continuing medical education activity for health care providers, and the community health worker (CHW) Lupus Clinical Trials Training (LuCTT). TIMELY introduced a unique roundtable meeting format to build on the existing online educational programs and facilitate discussions between local clinical trial sites and provider and CHW participants.

Methods: This study used an online pretest and posttest design to assess changes in theory-based behavioral predictors of lupus clinical trial referrals and engagement (ie, knowledge, attitudes, self-efficacy, and intentions) among providers and CHWs. Participants completed MIMICT or LuCTT and then were eligible to participate in roundtable meetings. Paired t-tests were used to assess changes in composite scores before and after the intervention for each of the outcomes.

Results: The final sample included 40 providers and 18 CHWs. Knowledge scores increased significantly for both providers (P < 0.01) and CHWs (P < 0.001) on completion of MIMICT and LuCTT, respectively. After participating in the TIMELY roundtable, providers' composite scores for self-efficacy and intentions significantly increased (P < 0.001). Provider self-efficacy gains were sustained at three months' follow-up (P < 0.001).

Conclusion: These promising findings highlight the potential and opportunities for the TIMELY program to improve behavioral predictors of trial referrals, including CHW knowledge and providers' knowledge, self-efficacy, and intentions to refer underrepresented patients to lupus clinical trials.

研究目的本研究评估了 "通过社区参与提高狼疮临床试验中少数族裔入组人数的培训"(TIMELY)项目在提高代表性不足的狼疮临床试验患者转诊率方面的效果。TIMELY 利用了美国风湿病学院现有的两项在线教育计划:TIMELY 利用了美国风湿病学会现有的两项在线教育计划:"提高少数族裔参与临床试验的材料"(MIMICT),这是一项针对医疗服务提供者的继续医学教育活动;以及 "社区保健工作者"(CHW)狼疮临床试验培训(LuCTT)。TIMELY 引入了一种独特的圆桌会议形式,以现有的在线教育项目为基础,促进当地临床试验机构与医疗服务提供者和社区保健员参与者之间的讨论:本研究采用在线前测/后测设计,评估狼疮临床试验转介/参与的理论行为预测因素(即知识、态度、自我效能和意向)在医疗服务提供者和社区保健工作者中的变化。参与者完成 MIMICT/LuCTT 后有资格参加圆桌会议。采用配对 t 检验来评估干预前干预后每项结果的综合得分变化:最终样本包括 40 名医疗服务提供者和 18 名社区保健工作者。两个医疗服务提供者的知识得分都有明显提高(结论:这些令人鼓舞的研究结果突显了医疗服务提供者和社区保健工作者的潜力和潜力:这些令人鼓舞的研究结果凸显了TIMELY项目在改善试验转介行为预测方面的潜力和机遇,包括CHW知识和医疗服务提供者的知识、自我效能以及将代表性不足的患者转介到狼疮临床试验的意愿。
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引用次数: 0
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Arthritis Care & Research
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