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Extracorporeal membrane oxygenation: unmet needs and perspectives. 体外膜肺氧合:未满足的需求和前景。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-16 DOI: 10.1007/s00296-024-05732-z
Bekzhan A Permenov, Olena Zimba, Marlen Yessirkepov, Mariya Anartayeva, Darkhan Suigenbayev, Burhan Fatih Kocyigit

Extracorporeal Membrane Oxygenation (ECMO) has become an essential lifesaving intervention for individuals with severe cardiovascular and respiratory failure. Its application is expanding across several therapeutic contexts, surpassing conventional indications. The COVID-19 pandemic has significantly stressed worldwide health systems to manage acute respiratory failure. ECMO has been employed as a vital intervention, particularly for patients with severe COVID-19-induced acute respiratory distress syndrome (ARDS). ECMO is applicable throughout pregnancy. The principal indications for ECMO in pregnant women align with those in the general population. However, pregnancy complicates issues, necessitating consideration of both mother's and infant's well-being. Patients with systemic rheumatic diseases are prone to experience life-threatening complications. While a majority of these patients respond to immunosuppressive drugs, a small percentage suffer organ failure and may benefit from ECMO as a bridge to recovery. The article addresses coagulation therapies, highlighting the necessity of precise anticoagulation to avert both bleeding and thrombosis, particularly in patients requiring extended ECMO support. Additionally, the pharmacokinetics of antibiotics in ECMO patients are summarized, including the influence of the ECMO circuit on drug metabolism. Survey-based research offers valuable insights into ECMO use, procedures, and challenges. The paper evaluates current survey-based research and ECMO guidelines, highlighting clinical practice, training, and resource availability discrepancies across ECMO centers globally. Particular focus is placed on the rehabilitation requirements of ECMO survivors, acknowledging the importance of early mobilization and post-discharge care in improving long-term outcomes and quality of life.

体外膜肺氧合(ECMO)已成为严重心血管和呼吸衰竭患者的重要救生手段。它的应用范围正在扩展到多个治疗领域,超越了传统的适应症。COVID-19 大流行给全球医疗系统管理急性呼吸衰竭带来了巨大压力。ECMO 已成为一种重要的干预措施,尤其是对 COVID-19 引起的严重急性呼吸窘迫综合征(ARDS)患者。ECMO 适用于整个孕期。孕妇使用 ECMO 的主要适应症与普通人群一致。然而,妊娠使问题复杂化,需要同时考虑母亲和婴儿的健康。系统性风湿病患者容易出现危及生命的并发症。虽然大多数患者对免疫抑制药物有反应,但也有一小部分患者会出现器官衰竭,可能会受益于 ECMO 作为康复的桥梁。文章讨论了凝血疗法,强调了精确抗凝以避免出血和血栓形成的必要性,尤其是需要延长 ECMO 支持时间的患者。此外,文章还总结了 ECMO 患者的抗生素药代动力学,包括 ECMO 电路对药物代谢的影响。基于调查的研究为 ECMO 的使用、程序和挑战提供了宝贵的见解。本文评估了当前基于调查的研究和 ECMO 指南,强调了全球各 ECMO 中心在临床实践、培训和资源可用性方面的差异。本文特别关注 ECMO 幸存者的康复要求,承认早期动员和出院后护理对改善长期预后和生活质量的重要性。
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引用次数: 0
Enhancing clinical reasoning skills for medical students: a qualitative comparison of LLM-powered social robotic versus computer-based virtual patients within rheumatology. 提高医科学生的临床推理能力:风湿病学中由 LLM 驱动的社交机器人与基于计算机的虚拟病人的定性比较。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-16 DOI: 10.1007/s00296-024-05731-0
Alexander Borg, Benjamin Jobs, Viking Huss, Cidem Gentline, Fabricio Espinosa, Mini Ruiz, Samuel Edelbring, Carina Georg, Gabriel Skantze, Ioannis Parodis

Virtual patients (VPs) are increasingly used in medical education to train clinical reasoning (CR) skills. However, optimal VP design for enhancing interactivity and authenticity remains unclear. Novel interactive modalities, such as large language model (LLM)-enhanced social robotic VPs might increase interactivity and authenticity in CR skill practice. To evaluate medical students' perceptions of CR training using an LLM-enhanced social robotic VP platform compared with a conventional computer-based VP platform. A qualitative study involved 23 third-year medical students from Karolinska Institutet, who completed VP cases on an LLM-enhanced social robotic platform and a computer-based semi-linear platform. In-depth interviews assessed students' self-perceived acquirement of CR skills using the two platforms. Thematic analysis was employed to identify themes and sub-themes. Three main themes were identified: authenticity, VP application, and strengths and limitations. Students found the social robotic platform more authentic and engaging. It enabled highly interactive communication and expressed emotions, collectively offering a realistic experience. It facilitated active learning, hypothesis generation, and adaptive thinking. Limitations included lack of physical examination options and, occasionally, mechanical dialogue. The LLM-enhanced social robotic VP platform offers a more authentic and interactive learning experience compared to the conventional computer-based platform. Despite some limitations, it shows promise in training CR skills, communication, and adaptive thinking. Social robotic VPs may prove useful and safe learning environments for exposing medical students to diverse, highly interactive patient simulations.

医学教育中越来越多地使用虚拟病人(VP)来训练临床推理(CR)技能。然而,增强互动性和真实性的最佳虚拟病人设计仍不明确。新颖的互动模式,如大语言模型(LLM)增强型社交机器人虚拟病人,可能会增加临床推理技能练习中的互动性和真实性。与传统的基于计算机的 VP 平台相比,评估医学生对使用 LLM 增强型社交机器人 VP 平台进行 CR 培训的看法。一项定性研究涉及 23 名来自卡罗林斯卡医学院的三年级医学生,他们在 LLM 增强型社交机器人平台和基于计算机的半线性平台上完成了 VP 案例。深入访谈评估了学生使用这两个平台获得 CR 技能的自我认知情况。采用主题分析法确定主题和次主题。确定了三大主题:真实性、VP 应用以及优势和局限性。学生认为社交机器人平台更真实、更吸引人。它实现了高度互动的交流,表达了情感,共同提供了逼真的体验。它促进了主动学习、假设生成和适应性思维。不足之处包括缺乏体格检查选项,偶尔会出现机械对话。与传统的基于计算机的平台相比,LLM 增强型社交机器人 VP 平台提供了更真实、更互动的学习体验。尽管存在一些局限性,但它在训练 CR 技能、交流和适应性思维方面还是大有可为的。社交机器人虚拟人机界面可以为医科学生提供有用、安全的学习环境,让他们接触多样化、高度互动的病人模拟。
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引用次数: 0
Association of enthesitis with severity of psoriasis in psoriatic arthritis: an observational study. 银屑病关节炎患者的关节内膜炎与银屑病严重程度的关系:一项观察性研究。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-15 DOI: 10.1007/s00296-024-05730-1
Simeon Grazio, Mirna Šitum, Frane Grubišić, Hana Skala Kavanagh, Ines Doko Vajdić, Kristina Krstanović, Iva Blajić

The relationship between dermatological and articular manifestations of psoriatic disease remains incompletely elucidated. There is no strong correlation between the severity of cutaneous psoriasis and the clinical phenotypes of psoriatic arthritis (PsA). This study aims to examine the correlation between the severity of psoriasis and various clinical features, including measures of severity and activity of PsA, in a real-world clinical setting. Seventy-six consecutive adult patients of both genders with confirmed diagnoses of psoriatic arthritis (PsA) and psoriasis were included in the study. The Psoriasis Area and Severity Index (PASI) was assessed alongside various PsA variables: tender joint count (TJC), swollen joint count (SJC), duration of morning stiffness, presence of dactylitis and number of affected digits, presence of enthesitis and Maastricht Ankylosing Spondylitis Enthesitis Score (MASES), patient's global assessment (PGA), and examiner's global assessment (EGA). Associations were analyzed using the Spearman correlation test and the Kruskal-Wallis test. Statistical significance was established at p = 0.05. Forty-two men and thirty-four women, median age of 56 (range 33-85) years, participated in the study. The median duration of psoriasis was 216 (range 0-600) months and median duration of PsA was 120 (range 7-456) months. There was no significant correlation between PASI and any PsA variables, except for the correlation between PASI and the presence of enthesitis (ρ = 0.285; p = 0.013). Moreover, older patients and patients with a long history of psoriasis manifested more often with enthesis as a sign of PsA. Our findings emphasize the correlation between the severity of psoriasis and presence of enthesitis in patients with PsA.

银屑病的皮肤表现与关节表现之间的关系仍未完全阐明。皮肤银屑病的严重程度与银屑病关节炎(PsA)的临床表型之间没有很强的相关性。本研究的目的是在真实的临床环境中考察银屑病的严重程度与各种临床特征(包括 PsA 的严重程度和活动度)之间的相关性。研究共纳入了 76 名确诊为银屑病关节炎(PsA)和银屑病的连续成年男女患者。在评估银屑病面积和严重程度指数(PASI)的同时,还评估了各种 PsA 变量:关节触痛计数(TJC)、关节肿胀计数(SJC)、晨僵持续时间、是否存在趾关节炎和受影响的手指数目、是否存在关节内炎和马斯特里赫特强直性脊柱炎关节内炎评分(MASES)、患者总体评估(PGA)和检查者总体评估(EGA)。采用斯皮尔曼相关性检验和 Kruskal-Wallis 检验对相关性进行分析。统计显著性以 p = 0.05 为标准。参与研究的有 42 名男性和 34 名女性,中位年龄为 56 岁(33-85 岁不等)。银屑病的中位病程为 216 个月(0-600 个月),PsA 的中位病程为 120 个月(7-456 个月)。PASI 与任何 PsA 变量之间都没有明显的相关性,只有 PASI 与是否存在关节炎之间存在相关性(ρ = 0.285; p = 0.013)。此外,年龄较大的患者和有长期银屑病病史的患者更常以关节内膜炎作为 PsA 的一种表现。我们的研究结果强调了银屑病的严重程度与 PsA 患者出现关节内炎之间的相关性。
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引用次数: 0
Correction to: Collating the voice of people with autoimmune diseases: Methodology for the third phase of the COVAD studies. 更正:整理自身免疫性疾病患者的心声:COVAD 第三阶段研究方法。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-14 DOI: 10.1007/s00296-024-05692-4
Esha Kadam, Mahnoor Javaid, Parikshit Sen, Sreoshy Saha, Nelly Ziade, Jessica Day, Chris Wincup, Laura Andreoli, Ioannis Parodis, Ai Lyn Tan, Samuel Katsuyuki Shinjo, Dzifa Dey, Lorenzo Cavagna, Tulika Chatterjee, Johannes Knitza, Guochun Wang, Nicola Dalbeth, Tsvetelina Velikova, Simone Battista, Karen Cheng, Peter Boyd, Linda Kobert, Abraham Edgar Gracia-Ramos, Srijan Mittal, Ashima Makol, Carlos Enrique Toro Gutiérrez, Carlo V Caballero-Uribe, Masataka Kuwana, Gerd-Rüdiger Burmester, Francis Guillemin, Elena Nikiphorou, Hector Chinoy, Vikas Agarwal, Latika Gupta
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引用次数: 0
An integrated approach to the treatment of Rheumatic diseases: the role of psychological interventions. 治疗风湿病的综合方法:心理干预的作用。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-14 DOI: 10.1007/s00296-024-05728-9
Sholpan Bekarissova, Olzhas Bekarisov, Dana Bekaryssova

Rheumatic diseases are chronic conditions that often result in significant physical and psychological challenges, reducing patients' quality of life and increasing the economic burden on healthcare systems. This study examines the vital role of psychological interventions in the comprehensive treatment of rheumatic diseases. The findings reveal a high prevalence of psycho-emotional disorders such as depression, anxiety, and stress among these patients, which can worsen disease progression and hinder treatment adherence. The review highlights the bidirectional relationship between the central nervous and immune systems, showing how psychological stress influences the pathophysiology of inflammatory diseases. Various psychological interventions are explored, including mind-body therapies, cognitive behavioral therapy, acceptance and commitment therapy, and mindfulness-based practices such as meditation, yoga, and tai chi. These approaches improve emotional well-being, help reduce pain, and enhance overall quality of life. The article emphasizes a holistic treatment model incorporating pharmacological care, physical rehabilitation, and psychological support. This integrated approach fosters more effective management of rheumatic diseases by addressing their complex nature and promoting better functional outcomes. The study advocates for the seamless incorporation of psychological support into routine clinical practice tailored to the biopsychosocial profile of each patient. Future research should focus on identifying the most effective psychological interventions for different patient groups to enhance the quality of life for individuals with rheumatic diseases.

风湿病是一种慢性疾病,通常会对患者的身体和心理造成巨大挑战,降低患者的生活质量,增加医疗系统的经济负担。本研究探讨了心理干预在风湿病综合治疗中的重要作用。研究结果显示,在这些患者中,抑郁、焦虑和压力等心理情感障碍的发病率很高,这可能会恶化疾病的进展并妨碍坚持治疗。综述强调了中枢神经系统和免疫系统之间的双向关系,展示了心理压力如何影响炎症性疾病的病理生理学。书中探讨了各种心理干预措施,包括身心疗法、认知行为疗法、接受和承诺疗法,以及冥想、瑜伽和太极拳等正念练习。这些方法可以改善情绪,帮助减轻疼痛,提高整体生活质量。文章强调了一种综合治疗模式,其中包含药物治疗、身体康复和心理支持。这种综合方法能更有效地治疗风湿性疾病,解决其复杂性,并促进更好的功能性结果。该研究提倡根据每位患者的生物心理社会特征,将心理支持无缝融入常规临床实践中。未来的研究应侧重于确定针对不同患者群体的最有效心理干预措施,以提高风湿病患者的生活质量。
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引用次数: 0
Physical component of SF-36 is associated with measures of disease activity in patients with psoriatic arthritis: a real-life study from a tertiary referral centre. SF-36 中的体能部分与银屑病关节炎患者的疾病活动度相关:一项来自三级转诊中心的真实生活研究。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-10 DOI: 10.1007/s00296-024-05727-w
Ines Doko Vajdić, Selma Cvijetić Avdagić, Frane Grubišić, Katarina Doko Šarić, Tonko Vlak, Hana Skala Kavanagh, Daniela Šošo, Simeon Grazio

Psoriatic arthritis (PsA) can lead to chronic disability. The aim of this study was to explore the association between disease activity and quality of life (QoL) in patients with PsA from the usual clinical practice. The study involved 143 consecutive adult patients with PsA (49.6% women and 50.4% males), with mean age of 57.75 ± 10.91 years, and duration of disease 11.6 ± 9 years. Tender (TJC) and swollen joints count (SJC), Disease activity score (DAS) 28, patient's global assessment (PtGA), physician's global assessment (PhGA), enthesitis score, number of fingers with dactylitis, sedimentation rate (ESR) and C-reactive protein (CRP) were evaluated. The functional assessment of chronic illness therapy - fatigue scale (FACIT-F) questionnaire was used in fatigue assessment and physical health domains of Short Form (SF)-36 questionnaire were chosen to assess subjective QoL: physical functioning (PF), role limitations due to physical health (RP), bodily pain (BP) and general health (GH). Significant correlations (p < 0.001) were found between FACIT-F and all SF-36 domains. DAS28, PtGA and PhGA were significantly correlated to two or three SF-36 domains, while ESR and CRP were not significantly correlated to any of SF-36 domains. Regression analysis showed, when controlling for age, that FACIT-F, dactylitis and DAS28 were the most significant predictors of SF-36 physical health domains. Regression and factor analyses confirmed that FACIT-F was most consistently associated with SF-36 physical health domains. In our real-life study most of the analyzed clinical measures of PsA were significantly associated with physical health domains of SF-36 questionnaire. Considering the strength of those associations, we conclude that PsA activity has mild to moderate impact on health-related Qol.

银屑病关节炎(PsA)可导致慢性残疾。本研究旨在从临床实践中探讨 PsA 患者的疾病活动度与生活质量(QoL)之间的关系。研究涉及 143 名连续的成年 PsA 患者(49.6% 为女性,50.4% 为男性),平均年龄为(57.75±10.91)岁,病程为(11.6±9)年。对触痛关节(TJC)和肿胀关节计数(SJC)、疾病活动度评分(DAS)28、患者总体评估(PtGA)、医生总体评估(PhGA)、关节内炎评分、有趾关节炎的手指数、血沉(ESR)和C反应蛋白(CRP)进行了评估。疲劳评估采用慢性疾病治疗功能评估-疲劳量表(FACIT-F)问卷,主观生活质量评估采用简表(SF)-36问卷的身体健康领域:身体功能(PF)、身体健康导致的角色限制(RP)、身体疼痛(BP)和一般健康(GH)。结果表明
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引用次数: 0
Successful treatment of Crohn's disease-related peripheral spondyloarthritis with upadacitinib: two case reports and case-based review. 用达帕替尼成功治疗克罗恩病相关的外周脊柱关节炎:两份病例报告和基于病例的综述。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-09 DOI: 10.1007/s00296-024-05735-w
Koji Suzuki, Mitsuhiro Akiyama, Hajime Inokuchi, Koichi Saito, Hironari Hanaoka, Yuko Kaneko

Inflammatory bowel disease (IBD), including ulcerative colitis and Crohn's disease (CD), not only causes significant intestinal inflammation but also leads to extra-intestinal manifestations such as spondyloarthritis (SpA). Although the efficacy of tumor necrosis factor (TNF) inhibitors has been reported for IBD-related SpA, some cases still encounter treatment failure, highlighting the need for novel therapeutic alternatives. Recently, Janus kinase inhibitors have demonstrated their efficacy in IBD and SpA, yet their impact on CD-related SpA remains unexplored. Here we present the first two cases of CD-related peripheral SpA successfully treated with upadacitinib. Additionally, our literature review identified a reported case of CD-related peripheral SpA treated with tofacitinib. All cases achieved clinical remission of both CD and peripheral SpA with Janus kinase inhibitors, and no adverse events or disease relapses were reported during the observation period. Our cases and literature review highlight the promising potential of Janus kinase inhibitors as a novel treatment not only for intestinal inflammation of CD, but also for CD-related peripheral SpA.

包括溃疡性结肠炎和克罗恩病(CD)在内的炎症性肠病(IBD)不仅会引起严重的肠道炎症,还会导致脊柱关节炎(SpA)等肠道外表现。虽然肿瘤坏死因子(TNF)抑制剂对 IBD 相关 SpA 有一定疗效,但仍有一些病例治疗失败,这凸显了对新型替代疗法的需求。最近,Janus 激酶抑制剂在 IBD 和 SpA 中的疗效得到了证实,但其对 CD 相关 SpA 的影响仍有待探索。在此,我们介绍了首例成功接受达帕替尼治疗的两例CD相关外周SpA病例。此外,我们在文献综述中还发现了一例使用托法替尼治疗 CD 相关外周 SpA 的病例。所有病例在接受 Janus 激酶抑制剂治疗后均实现了 CD 和外周 SpA 的临床缓解,且在观察期内未出现不良事件或疾病复发。我们的病例和文献综述凸显了 Janus 激酶抑制剂作为一种新型治疗方法的巨大潜力,它不仅可以治疗 CD 的肠道炎症,还可以治疗 CD 相关的外周 SpA。
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引用次数: 0
Increased prevalence of inflammatory arthritis, systemic lupus erythematosus and systemic sclerosis, during 2020-2023 versus 2016-2019 in a Nation-Wide Cohort Study. 在一项全国队列研究中,2020-2023 年炎症性关节炎、系统性红斑狼疮和系统性硬化症的发病率较 2016-2019 年有所上升。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-08 DOI: 10.1007/s00296-024-05733-y
Vasiliki-Kalliopi Bournia, George E Fragoulis, Panagiota Mitrou, Anastasios Tsolakidis, Konstantinos Mathioudakis, Dimitrios Vassilopoulos, Maria Tektonidou, Dimitrios Paraskevis, Petros P Sfikakis

Although several studies have explored the geoepidemiology of autoimmune rheumatic diseases (ARD), trends of their frequency overtime are under-investigated. Herein, in a nation-wide study, we examine trends in the prevalence of various ARD over-time, taking also into account the Covid-19 pandemic. In this retrospective study in the entire Greek adult population (approximately 10.000.000 people), we searched the electronic prescription database of the e-Government Centre for Social Security Services using prespecified ICD-10 codes to capture all adult patients with Psoriatic Arthritis (PsA), Rheumatoid Arthritis (RA), Ankylosing Spondylitis (AS), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc) and Polymyalgia Rheumatica or Giant Cell Arteritis (PMR/GCA). Two sequential 4-year periods, namely 2016-2019 and 2020-2023 were compared. Prevalence of RA, PsA, AxSpA, SLE and SSc increased significantly during 2020-2023 compared to 2016-2019. This applies to both genders and to all age groups for RA, PsA and AxSpA, to female patients in SLE and SSc and to patients 18-39 years in SLE and ≥ 60 years in SSc. Overall, there was 47% increase in prevalence for AxSpA (0.100% in 2016-19 vs 0.147% in 2020-23), 36.5% for PsA (0.148% vs 0.202%), 20.6% for RA (0.467% vs 0.563%), 19% for SLE (0.137% vs 0.163%) and 13% for SSc (0.023% vs 0.026%). A 16.3% decrease was evident in GCA/PMR, limited to those ≥ 40 years old. In a nation-wide study we confirm that ARD prevalence increases over-time, whereas a contribution of Covid-19 pandemic to our results during 2020-2023, cannot be excluded. Additional human, medical and financial resources will be needed to cover the increased needs of ARD patients.

虽然已有多项研究探讨了自身免疫性风湿病(ARD)的地理流行病学,但对其发病率的变化趋势却调查不足。在这项全国性研究中,我们考察了各种自身免疫性风湿病的发病率随时间变化的趋势,同时也考虑到了 Covid-19 的流行。在这项针对整个希腊成年人口(约 10,000.000人)中,我们使用预先指定的ICD-10代码检索了电子政府社会保障服务中心的电子处方数据库,以捕获所有患有银屑病关节炎(PsA)、类风湿关节炎(RA)、强直性脊柱炎(AS)、系统性红斑狼疮(SLE)、系统性硬化症(SSc)和多发性风湿性肌痛或巨细胞动脉炎(PMR/GCA)的成年患者。比较了两个连续的四年期,即 2016-2019 年和 2020-2023 年。与 2016-2019 年相比,2020-2023 年期间 RA、PsA、AxSpA、系统性红斑狼疮和 SSc 的患病率显著增加。在 RA、PsA 和 AxSpA 患者中,这适用于所有年龄组的男女患者;在系统性红斑狼疮和系统性红斑狼疮患者中,这适用于女性患者;在系统性红斑狼疮患者中,这适用于 18-39 岁的患者;在系统性红斑狼疮患者中,这适用于≥ 60 岁的患者。总体而言,AxSpA 的患病率增加了 47%(2016-19 年为 0.100% vs 2020-23 年为 0.147%),PsA 增加了 36.5%(0.148% vs 0.202%),RA 增加了 20.6%(0.467% vs 0.563%),SLE 增加了 19%(0.137% vs 0.163%),SSc 增加了 13%(0.023% vs 0.026%)。GCA/PMR下降了16.3%,但仅限于年龄≥40岁的人群。在一项全国性研究中,我们证实急性呼吸道疾病的流行率会随着时间的推移而增加,但不能排除在 2020-2023 年期间,Covid-19 大流行会对我们的研究结果产生影响。为满足 ARD 患者日益增长的需求,我们需要更多的人力、医疗和财政资源。
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引用次数: 0
Familial Mediterranean fever: perspective on female fertility and disease course in pregnancy from a multicenter nationwide network. 家族性地中海热:全国多中心网络对女性生育力和妊娠期病程的透视。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-01 Epub Date: 2023-09-02 DOI: 10.1007/s00296-023-05436-w
Fatma Gül Yurdakul, Hatice Bodur, Hasan Fatih Çay, Ülkü Uçar, Yaşar Keskin, Betül Sargın, Gülcan Gürer, Ozan Volkan Yurdakul, Mustafa Çalış, Hülya Deveci, Yıldıray Aydın, Sami Hizmetli, Remzi Çevik, Ali Yavuz Karahan, Şebnem Ataman, Mehmet Tuncay Duruöz, Hilal Ecesoy, Zafer Günendi, Murat Toprak, Nesrin Şen, Duygu Altıntaş, Ahmet Kıvanç Cengiz, Gökhan Çağlayan, Ali Nail Demir, Hüseyin Kaplan, Sertaç Ketenci, Meltem Alkan Melikoğlu, Mehmet Nayimoğlu, Kemal Nas, Banu Sarıfakıoğlu, İlhan Sezer

The aim of this study was to analyze the pregnancy process, especially the Familial Mediterranean fever (FMF) disease course and attack types during pregnancy, and to examine the relationship between disease-related factors and female infertility in FMF patients. The study, which was planned in a multicenter national network, included 643 female patients. 435 female patients who had regular sexual intercourse were questioned in terms of infertility. Pregnancy and delivery history, FMF disease severity and course during pregnancy were evaluated. The relationship between demographic and clinical findings, disease severity, genetic analysis results and infertility was investigated. 401 patients had at least 1 pregnancy and 34 patients were diagnosed with infertility. 154 patients had an attack during pregnancy. 61.6% of them reported that attacks during pregnancy were similar to those when they were not pregnant. The most common attack symptoms were fever, fatigue and abdominal pain-peritonitis (96%, 87%, and 83%, respectively) in the pregnancy period. The disease-onset age, disease activity score, gene mutation analyses, and regular colchicine use (> 90%) were similar between the fertile and infertile groups, while the frequency of previous appendectomy and alcohol consumption rates were higher in individuals with infertility. Our results indicated no significant change in the frequency and severity of attacks during pregnancy. The low rate of infertility (7.8%) in our patients was noted. It has been suggested that the risk of FMF-related infertility may not be as high as thought in patients who are followed up regularly and received colchicine.

这项研究的目的是分析妊娠过程,尤其是妊娠期间家族性地中海热(FMF)的病程和发作类型,并研究疾病相关因素与 FMF 患者女性不孕症之间的关系。该研究计划在一个多中心国家网络中进行,共纳入了 643 名女性患者。对 435 名有规律性交的女性患者进行了不孕症方面的询问。对妊娠和分娩史、FMF 疾病的严重程度和妊娠过程进行了评估。调查了人口统计学和临床结果、疾病严重程度、基因分析结果与不孕症之间的关系。401 名患者至少有一次怀孕经历,34 名患者被诊断为不孕症。154 名患者在怀孕期间发病。其中 61.6% 的患者表示,怀孕期间的发病症状与未怀孕时相似。妊娠期最常见的发病症状是发热、乏力和腹痛-腹膜炎(分别占 96%、87% 和 83%)。生育组和不育组的发病年龄、疾病活动度评分、基因突变分析和定期服用秋水仙碱的比例(> 90%)相似,而不育患者既往接受阑尾切除术的频率和饮酒率较高。我们的研究结果表明,妊娠期疾病发作的频率和严重程度没有明显变化。我们注意到患者的不孕率较低(7.8%)。有研究表明,在定期随访并接受秋水仙碱治疗的患者中,与 FMF 相关的不孕症风险可能没有想象的那么高。
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引用次数: 0
Social media has become a mainstream source of medical information for patients with rheumatic diseases: a cross-sectional survey of patients. 社交媒体已成为风湿病患者获取医疗信息的主流来源:一项针对患者的横断面调查。
IF 3.2 3区 医学 Q2 RHEUMATOLOGY Pub Date : 2024-10-01 Epub Date: 2024-06-08 DOI: 10.1007/s00296-024-05634-0
Beom Joon Myeoung, Ju Hyun Park, Byung Joo Lee, Hyeok Jun Jeong, Aran Kim, Min Wook So, Seung-Geun Lee

This study analyzed the status of medical information acquisition through social media (SM) and its impact on healthcare utilization among patients with rheumatic diseases (RDs) who visited the rheumatology department of a tertiary hospital. We consecutively evaluated 102 patients with RDs in this single-center cross-sectional survey. Using a face-to-face survey, patients were asked about the sources they used to acquire medical information, factors influencing their visits to tertiary hospitals, and the potential impact of acquiring medical information on RDs through SM. SM refers to YouTube, Facebook, Instagram, Kakao Channel, Naver Band, and X. The mean age was 42.3 years and 39% were female. The most common disease was ankylosing spondylitis (45.1%), followed by rheumatoid arthritis (20.6%). The most frequent method for acquiring medical information regarding RDs, except for rheumatologists, was internet portal sites (47.8%), followed by SM (40.2%). The most important factor influencing the decision to visit a tertiary hospital was medical doctors (51%); only 1% of the patients responded that SM was the most crucial factor in determining their visit. Most patients (77.5%) responded that acquiring medical information through SM would help them manage their diseases. Our data revealed that a substantial proportion of patients with RDs obtained medical information through SM. However, the impact of SM on visiting a tertiary hospital was minimal, suggesting that SM has become a mainstream source of medical information, yet the reliability of SM remains relatively low. Rheumatology societies should establish SM platforms capable of providing high-quality medical information.

本研究分析了在一家三级医院风湿病科就诊的风湿病患者通过社交媒体(SM)获取医疗信息的情况及其对医疗服务利用率的影响。在这项单中心横断面调查中,我们连续评估了 102 名风湿病患者。通过面对面调查,我们询问了患者获取医疗信息的来源、影响他们到三级医院就诊的因素以及通过SM获取RD医疗信息的潜在影响。SM指的是YouTube、Facebook、Instagram、Kakao Channel、Naver Band和X。最常见的疾病是强直性脊柱炎(45.1%),其次是类风湿性关节炎(20.6%)。除风湿免疫科医生外,获取有关研发人员的医疗信息最常用的方法是互联网门户网站(47.8%),其次是 SM(40.2%)。影响患者决定去三级医院就诊的最重要因素是医生(51%);只有 1%的患者回答 SM 是决定其就诊的最关键因素。大多数患者(77.5%)回答说,通过 SM 获取医疗信息有助于他们控制疾病。我们的数据显示,有相当比例的种族歧视患者通过 SM 获取医疗信息。然而,SM对到三级医院就诊的影响微乎其微,这表明SM已成为医疗信息的主流来源,但其可靠性仍相对较低。风湿病学会应建立能够提供高质量医疗信息的SM平台。
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Rheumatology International
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