rheumatologists

风湿病学家
  • 文章类型: Journal Article
    背景:这项研究探讨了中国患者和风湿病学家对干燥综合征(SS)的中医态度和看法的异同。包括分析影响他们决策的因素。
    方法:使用匿名问卷对北京三个三级医疗中心的SS患者和中国多家医院的风湿病临床医生进行了多中心调查。结果采用描述性统计分析。
    结果:来自中国31个省市的患者942份有效问卷,男女比例约为1:14,平均年龄为48.81岁,和7(4,10)年的中位病程。有320份来自风湿病学家的有效问卷,覆盖中国30个省市,男女比例约为0.87:1,平均年龄为48岁,工作时间中位数为10.5(6,15)年。风湿病学家每月平均治疗15(11,50)例SS,SS占所有风湿性疾病的比例中位数为6.66%(6-10%)。许多患者认为中医可以治本,最受期待的中医疗法是中医专利处方和药茶。相反,风湿病学家高度重视中医的功效,和最常用的中草药汤。大多数医患群体对中医治疗持积极态度,以低副作用为主要优势。回归分析显示,40岁以上患者病程>4年,使用中医的概率增加了1-6倍;工作超过15年的医生在临床工作中推荐中医的概率,中医和中西医结合治疗增加了1-2倍。
    结论:中医已被广泛接受并受到医患群体的关注,尤其是老年患者和有经验的风湿病专家。然而,负面偏见和缺乏关于中医治疗和SS本身的准确信息需要改进。中药剂型与疗效之间的矛盾是一大难题,和患者对方便有效的中药专利制剂的需求表明,未来的工作应集中在开发具有明确组成和机制的中药专利制剂上。
    BACKGROUND: This study explored similarities and differences among Chinese patients and rheumatologists in their attitudes towards and perceptions of traditional Chinese medicine (TCM) for Sjögren\'s syndrome (SS), including analyzing factors that influenced their decision making.
    METHODS: An anonymous questionnaire was used to conduct a multicenter survey among patients with SS at three tertiary care medical centers in Beijing and among rheumatology clinicians at several hospitals across China. Results were analyzed using descriptive statistics.
    RESULTS: There were 942 valid questionnaires from patients from 31 provinces and cities in China, with a male-to-female ratio of approximately 1:14, a mean age of 48.81 years, and a median disease duration of 7 (4, 10) years. There were 320 valid questionnaires from rheumatologists, covering 30 provinces and cities in China, with a male-to-female ratio of approximately 0.87:1, a mean age of 48 years, and a median work duration of 10.5 (6, 15) years. The rheumatologists treated a median of 15 (11, 50) SS cases per month, and the median proportion of SS to all rheumatic diseases was 6.66% (6-10%). Many patients believed TCM could cure the root of the disease, and the most expected TCM therapies were TCM patent prescriptions and medicinal teas. Conversely, rheumatologists placed high value on the efficacy of TCM, and most commonly prescribed Chinese herbal decoctions. Most doctor-patient groups were positive about TCM treatment, citing the low side effects as the major advantage. Regression analysis showed that for patients over 40 years old with a course of disease > 4 years, the probability of using TCM has increased by 1-6 times; the probability of recommending TCM in clinical work of doctors who have worked for more than 15 years, TCM and integrated traditional Chinese and western medicine has increased 1-2 times.
    CONCLUSIONS: TCM has become widely accepted and earned attention from doctor-patient groups, especially among older patients and experienced rheumatologists. However, negative prejudices and absence of accurate information about TCM treatments and SS itself require improvement. The contradiction between TCM dosage form and efficacy is a major problem, and patient demand for convenient and efficient TCM patent preparations suggests future work should focus on developing TCM patent preparations with clear compositions and mechanisms.
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  • 文章类型: Journal Article
    背景:炎性风湿性疾病(IRD)的诊断通常由于非特异性症状和风湿病学家的短缺而延迟。数字诊断决策支持系统(DDSS)有可能加快诊断,并帮助患者更有效地导航医疗保健系统。
    目的:本研究的目的是评估基于移动人工智能(AI)的症状检查程序(Ada)和基于网络的自我转诊工具(Rheport)对IRD的诊断准确性。
    方法:前瞻性,多中心,开放标签,我们对新到3个风湿病中心就诊的患者进行了交叉随机对照试验.参与者被随机分配使用Ada或Rheport完成症状评估。主要结果是DDSS对IRD的正确识别,定义为Ada建议的诊断列表中存在任何IRD或Rheport达到预定阈值评分。金标准是风湿病学家做出的诊断。
    结果:共纳入600例患者,其中214人(35.7%)被诊断为IRD。最常见的IRD是类风湿性关节炎,有69例(11.5%)患者。Rheport的疾病建议和Ada的前1(D1)和前5(D5)疾病建议显示,总体诊断准确率为52%,63%,58%,分别,用于IRDs。Rheport对IRD的敏感性为62%,特异性为47%。Ada的D1和D5疾病建议的敏感性分别为52%和66%,分别,特异性为68%和54%,分别,关于IRD。Ada关于个体诊断的诊断准确性是异质性的,与其他诊断相比,Ada在识别类风湿性关节炎方面的表现明显更好(D1:42%;D5:64%)。Rheport对任何风湿性疾病诊断与AdaD1的一致性的Cohenκ统计为0.15(95%CI0.08-0.18),与AdaD5为0.08(95%CI0.00-0.16),表明2个DDSS之间存在任何风湿性疾病的一致性较差。
    结论:据我们所知,这是与患者实际使用DDSS的最大比较性DDSS试验.在这种高患病率患者人群中,两种DDSS对IRD的诊断准确性都没有希望。DDSS可能导致滥用稀缺的医疗保健资源。我们的结果强调了需要严格的监管和重大改进,以确保DDSS的安全性和有效性。
    背景:德国临床试验注册DRKS00017642;https://drks。de/search/en/trial/DRKS00017642.
    BACKGROUND: The diagnosis of inflammatory rheumatic diseases (IRDs) is often delayed due to unspecific symptoms and a shortage of rheumatologists. Digital diagnostic decision support systems (DDSSs) have the potential to expedite diagnosis and help patients navigate the health care system more efficiently.
    OBJECTIVE: The aim of this study was to assess the diagnostic accuracy of a mobile artificial intelligence (AI)-based symptom checker (Ada) and a web-based self-referral tool (Rheport) regarding IRDs.
    METHODS: A prospective, multicenter, open-label, crossover randomized controlled trial was conducted with patients newly presenting to 3 rheumatology centers. Participants were randomly assigned to complete a symptom assessment using either Ada or Rheport. The primary outcome was the correct identification of IRDs by the DDSSs, defined as the presence of any IRD in the list of suggested diagnoses by Ada or achieving a prespecified threshold score with Rheport. The gold standard was the diagnosis made by rheumatologists.
    RESULTS: A total of 600 patients were included, among whom 214 (35.7%) were diagnosed with an IRD. Most frequent IRD was rheumatoid arthritis with 69 (11.5%) patients. Rheport\'s disease suggestion and Ada\'s top 1 (D1) and top 5 (D5) disease suggestions demonstrated overall diagnostic accuracies of 52%, 63%, and 58%, respectively, for IRDs. Rheport showed a sensitivity of 62% and a specificity of 47% for IRDs. Ada\'s D1 and D5 disease suggestions showed a sensitivity of 52% and 66%, respectively, and a specificity of 68% and 54%, respectively, concerning IRDs. Ada\'s diagnostic accuracy regarding individual diagnoses was heterogenous, and Ada performed considerably better in identifying rheumatoid arthritis in comparison to other diagnoses (D1: 42%; D5: 64%). The Cohen κ statistic of Rheport for agreement on any rheumatic disease diagnosis with Ada D1 was 0.15 (95% CI 0.08-0.18) and with Ada D5 was 0.08 (95% CI 0.00-0.16), indicating poor agreement for the presence of any rheumatic disease between the 2 DDSSs.
    CONCLUSIONS: To our knowledge, this is the largest comparative DDSS trial with actual use of DDSSs by patients. The diagnostic accuracies of both DDSSs for IRDs were not promising in this high-prevalence patient population. DDSSs may lead to a misuse of scarce health care resources. Our results underscore the need for stringent regulation and drastic improvements to ensure the safety and efficacy of DDSSs.
    BACKGROUND: German Register of Clinical Trials DRKS00017642; https://drks.de/search/en/trial/DRKS00017642.
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  • 文章类型: Journal Article
    目的:钠葡萄糖协同转运蛋白2(SGLT2)抑制剂是最初开发用于治疗糖尿病的一类药物,尽管它们的心脏和肾脏保护作用深远。风湿病界对将这些药物应用于我们的临床实践产生了浓厚的兴趣,特别是慢性肾脏疾病与持续性蛋白尿。
    结果:SGLT2抑制剂已被批准用于2型糖尿病患者,射血分数降低或保留的心力衰竭,2型糖尿病背景下的动脉粥样硬化性心血管疾病,以及慢性肾病和蛋白尿。关于SGLT2抑制剂的大量研究已在很大程度上排除了因自身免疫性肾小球肾炎引起的蛋白尿慢性肾病患者,因为他们担心免疫抑制会造成混淆。Dapagliflozin和CKD不良结局预防试验(DAPA-CKD)显示,SGLT2抑制可降低IgA肾病患者肾脏疾病的进展。将其扩展到其他自身免疫性肾小球肾病,几项小型研究显示,SGLT2抑制剂治疗的狼疮性肾炎患者蛋白尿改善.一项评估SGLT2抑制剂在狼疮患者中的安全性的研究发现,即使伴随使用免疫抑制也没有具体问题。
    结论:小型研究表明,SGLT2抑制剂可以安全有效地用于狼疮性肾炎患者。需要进一步的研究来确定这些药物适合风湿病治疗设备的位置。
    OBJECTIVE: Sodium glucose cotransporter 2 (SGLT2) inhibitors are a class of medications initially developed for the treatment of diabetes, although their cardiac and renal protective benefits are far reaching. There has been marked interest in the rheumatology community to adopt these medications into our clinical practice, particularly for chronic kidney disease with persistent proteinuria.
    RESULTS: SGLT2 inhibitors have been approved for patients with type 2 diabetes mellitus, heart failure with reduced or preserved ejection fraction, atherosclerotic cardiovascular disease in the setting of type 2 diabetes mellitus, as well as chronic kidney disease with proteinuria. Large studies on SGLT2 inhibitors have largely excluded patients with proteinuric chronic kidney disease due to autoimmune glomerulonephritis due to concerns for confounding from immunosuppression. The Dapagliflozin and Prevention of Adverse Outcomes in CKD Trial (DAPA-CKD) showed that SGLT2 inhibition decreased progression of renal disease in patients with IgA nephropathy. Expanding this to other autoimmune glomerulonephropathies, several small studies have shown improvements in proteinuria in patients with lupus nephritis treated with SGLT2 inhibitors. A study evaluating safety of SGLT2 inhibitors in patients with lupus identified no specific concerns even with concomitant use of immunosuppression.
    CONCLUSIONS: Small studies have shown that SGLT2 inhibitors can been utilized safely and efficaciously in patients with lupus nephritis. Additional research is needed to identify where these medications fit into the rheumatology treatment armamentarium.
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  • 文章类型: Journal Article
    背景叙利亚持续不断的冲突严重影响了医疗保健系统,特别是在风湿病领域。这项研究的目的是评估叙利亚西北地区风湿病的现状,医疗基础设施受到严重影响。方法这是一项回顾性研究,回顾了2019年9月至2022年2月在叙利亚西北部内科诊所就诊的所有风湿病患者。回顾性收集基线人口统计数据和诊断,没有任何数据重复,从门诊记录。该研究还回顾了叙利亚西北地区的调查和药物的可用性。结果我们分析了488例诊断为风湿性疾病的患者(平均年龄:37.4;63%为女性)的数据。最普遍的病症是结缔组织疾病(25.6%),与骨关节炎(12.1%)和类风湿性关节炎(8.2%)有关。持续的冲突导致风湿病学家严重短缺,只有三人服务于550万人口。此外,冲突破坏了风湿病诊断测试的提供和质量,减少患者的可及性。药物的缺乏和费用的增加加剧了风湿性疾病患者的医疗保健的复杂性。结论本研究强调了改善医疗保健服务的迫切需要,并提出了解决叙利亚西北部风湿病护理差距的解决方案。
    Background  The ongoing conflict in Syria has significantly affected the health care system, particularly in the realm of rheumatology. The purpose of this study is to assess the current state of rheumatic diseases in the northwestern region of Syria, where the health care infrastructure has been severely impacted. Methods  This was a retrospective study reviewing all patients with rheumatologic conditions seen in internal medicine clinics in northwest Syria between September 2019 and February 2022. Baseline demographic data and diagnoses were collected retrospectively, without any data duplication, from outpatient clinic records. The study also reviewed the availability of investigations and drugs in the northwestern region of Syria. Results  We analyzed data from 488 patients (average age: 37.4; 63% female) diagnosed with rheumatic diseases. The most prevalent condition was connective tissue disorders (25.6%), with osteoarthritis (12.1%) and rheumatoid arthritis (8.2%) following. The ongoing conflict has led to a significant shortage of rheumatologists, with only three serving a population of 5.5 million. Furthermore, the conflict has disrupted the provision and quality of rheumatology diagnostic tests, reducing patient accessibility. The dearth of medications and increased costs have compounded the complexity of health care for those with rheumatic diseases. Conclusions  This study highlights the urgent need for improved health care services and proposes solutions to address gaps in rheumatic care in northwest Syria.
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  • 文章类型: Journal Article
    目的是探索风湿病学家目前在英国系统性硬化症患者中肺动脉高压的临床筛查实践,并确定筛查障碍并考虑潜在的解决方案。
    对31个问题进行了调查,包括六个部分:临床医生人口统计,筛查的重要性,筛选实践,筛查的障碍,治疗和病人教育。该调查在英国工作的风湿病学家中传播。
    在英国工作的四十四位风湿病学家参与了这项研究,大多数人完成了所有的问题。大约三分之一(37.0%)在专门的系统性硬化症单位(大学或综合医院(54.5%和45.4%,分别)))。大多数人认识到系统性硬化症-肺动脉高压是发病和死亡的主要原因。超过一半(60.0%)报告使用DETECT算法筛查系统性硬化症-肺动脉高压,尽管有时也使用其他算法。所有受访者都使用了经胸超声心动图,几乎所有(95.0%)都进行了肺功能检查以进行筛查。确定了与系统性硬化症-肺动脉高压筛查有关的各种挑战和障碍,报告最多的是难以解释其他医院的结果,以及诊断测试的等待时间延长(76.0%和74.0%,分别)。大多数受访者同意获得关键调查(87.0%),持续的临床医师教育(82.0%),多学科会议(79.5%)和更好地理解所提出的筛查算法(79.5%)可能是潜在的解决方案.
    筛查系统性硬化症患者的肺动脉高压对提高生存率至关重要,但是英国风湿病学家之间存在不同的实践。解决方案包括对医疗保健专业人员进行指导,在中心之间共享信息并整合护理服务。
    UNASSIGNED: The objectives were to explore rheumatologists\' current clinical screening practices of pulmonary arterial hypertension in patients with systemic sclerosis in the United Kingdom and to identify barriers to screening and consider potential solutions.
    UNASSIGNED: A survey of 31 questions was developed and included six sections: clinician demographics, the importance of screening, screening practices, barriers to screening, treatment and patient education. The survey was disseminated among rheumatologists working in the United Kingdom.
    UNASSIGNED: Forty-four rheumatologists working in the United Kingdom participated in the study, and the majority completed all the questions. Around one-third (37.0%) worked in specialised systemic sclerosis units (university or general hospitals (54.5% and 45.4%, respectively)). The majority recognised that systemic sclerosis-pulmonary arterial hypertension is a major cause of morbidity and mortality. Over half (60.0%) reported using the DETECT algorithm to screen for systemic sclerosis-pulmonary arterial hypertension, although other algorithms were also sometimes used. All of the respondents utilised transthoracic echocardiogram, and almost all (95.0%) performed pulmonary function tests for screening purposes. Various challenges and barriers were identified relating to systemic sclerosis-pulmonary arterial hypertension screening, with the difficulty in interpreting results from other hospitals and extended wait times for diagnostic tests being the most reported (76.0% and 74.0%, respectively). Most respondents agreed that access to key investigations (87.0%), ongoing clinician education (82.0%), multidisciplinary meetings (79.5%) and a better understanding of proposed screening algorithms (79.5%) could be potential solutions.
    UNASSIGNED: Screening patients with systemic sclerosis for pulmonary arterial hypertension is crucial to improve survival, but variable practices exist among UK rheumatologists. Solutions include educating healthcare professionals on guidelines, sharing information between centres and integrating care services.
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  • 文章类型: Journal Article
    脊柱关节炎(SpA)是一组炎症性疾病,包括轴向SpA(axSpA),以脊柱和骶髂关节发炎为特征。医疗保健专业人员在诊断和管理axSpA中起着至关重要的作用。评估他们的知识,感知,和实践对于加强病人护理至关重要。这项研究的目的是通过进行在线调查来评估这些因素。这项在线调查是使用SurveyMonkey.com进行的,以评估医疗保健专业人员的知识,感知,以及与axSpA诊断相关的实践,管理,和监测。问卷包括关于定义的问题,管理策略,监测方法,治疗方案,和护理障碍。使用了方便的取样,并通过MicrosoftExcel对数据进行描述性分析。共有164名医疗保健专业人员参加;大多数受访者是来自不同地理位置(27个国家)的风湿病学家。大多数参与者熟悉axSpA定义和诊断标准,展示高度的专业知识。观察到随访间隔和诊断偏好的差异,反映临床异质性。72(43.9%)个人拥有多学科团队,经常包括风湿病学家,物理治疗师,和放射科医生。在参与者中,73人(44.5%)进行了在线/电话随访。药理学和非药理学治疗方法各不相同,指出个性化护理的重要性。糖皮质激素的使用因国家而异。认识到炎症性背痛,解释射线照片,早期诊断对医学教育至关重要。这项研究提供了有关医疗保健专业人员知识的有益数据,感知,和关于axSpA的实践。虽然熟悉诊断和多学科方法是积极的,有可能规范管理,改善远程医疗服务,消除身体活动的障碍,优化治疗方案。
    Spondyloarthritis (SpA) is a group of inflammatory disorders, including axial SpA (axSpA), characterized by inflammation in the spine and sacroiliac joints. Healthcare professionals have a crucial role in diagnosing and managing axSpA. Assessing their knowledge, perceptions, and practices is essential to enhance patient care. The objective of this study is to evaluate these factors by conducting an online survey. This online survey was performed using SurveyMonkey.com to assess healthcare professionals\' knowledge, perceptions, and practices related to axSpA diagnosis, management, and monitoring. The questionnaire included questions about definitions, management strategies, monitoring approaches, treatment options, and barriers to care. Convenience sampling was used, and the data were analyzed descriptively by Microsoft Excel. One hundred sixty-four healthcare professionals participated; most respondents were rheumatologists from various geographic locations (27 countries). Most participants were familiar with axSpA definitions and diagnostic criteria, demonstrating high expertise. Variations were seen in follow-up intervals and diagnostic preferences, reflecting clinical heterogeneity. Seventy-two (43.9%) individuals had a multidisciplinary team, frequently including rheumatologists, physiotherapists, and radiologists. Of the participants, 73 (44.5%) had online/telephone follow-up sessions. The pharmacological and non-pharmacological treatment approaches varied, pointing to the importance of personalized care. Glucocorticoid use varied among countries. Recognizing inflammatory back pain, interpreting radiographs, and diagnosing early was essential to medical education. This study provides beneficial data on healthcare professionals\' knowledge, perceptions, and practices regarding axSpA. While diagnostic familiarity and multidisciplinary approach are positives, there is a potential to standardize management, improve telemedicine services, remove barriers to physical activity, and optimize treatment options.
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  • 文章类型: Journal Article
    非放射学轴性脊柱关节炎(nr-axSpA)属于轴性脊柱关节炎(axSpA)的范围。nr-axSpA概念的出现,定义为骶髂关节没有明显的侵蚀性损伤,促进了许多旨在加强对这种情况的早期发现和管理的举措。这项研究的目的是评估知识,态度,以及摩洛哥风湿病学家对nr-axSpA的诊断和管理相关实践。方法我们在摩洛哥风湿病学家社区中进行了一项横断面在线调查。风湿病学家通过电子邮件收到结构化的谷歌表格(谷歌公司,山景,CA)问卷分为四个部分:风湿病学家的社会人口统计数据,知识,态度,与nr-axSpA诊断和治疗管理相关的实践。结果共有110名风湿病专家(平均年龄44±13岁,77.3%女性,中位专业经验为12年(4,75;26.25年))参与调查(应答率为25%).大多数响应者报告脊柱关节炎(SpA)的诊断延迟问题(93.6%);70.9%的风湿病学家错误地将2009年国际关节炎协会(ASAS)axSpA的分类标准视为诊断标准。风湿病学家对推荐的磁共振成像(MRI)序列检测骶髂关节炎症和SpA结构变化的认识差异很大,从69.1%到14.5%。他们对这些关节中其他软骨下水肿病例的了解,超越SpA,从48.2%到87.3%不等。几乎所有风湿病学家都认为使用骶髂MRI有助于axSpA的早期诊断(97.3%),但也可能导致假阳性诊断,47.3%的风湿病学家认为,在nr-axSpA中错误地使用2009年ASAS分类标准作为诊断标准也可能导致假阳性诊断.在他们的实践中,2009年ASAS分类标准被39.1%的风湿病学家用作axSpA的诊断标准。在所有参与者中,91.8%表明他们接近nr-axSpA类似于放射学的轴向脊柱关节炎,在生物疗法的建议方面存在差异。结论我们的调查提供了摩洛哥风湿病学家nr-axSpA管理现状的见解。它还解决了风湿病学家使用axSpA的2009ASAS分类标准作为诊断标准时对假阳性诊断的风险以及过度依赖MRI相关的潜在误诊风险的担忧。尽管它对早期诊断有用。
    Introduction Non-radiographic axial spondyloarthritis (nr-axSpA) is within the spectrum of axial spondyloarthritis (axSpA). The emergence of the nr-axSpA concept, defined by the absence of significant erosive damage to the sacroiliac joints, has prompted numerous initiatives aimed at enhancing the early detection and management of this condition. The aim of the study was to assess the knowledge, attitudes, and practices related to the diagnosis and management of nr-axSpA by rheumatologists in Morocco. Methods We conducted a cross-sectional online survey among the rheumatologist community in Morocco. Rheumatologists received via e-mail a structured Google Forms (Google Inc., Mountainview, CA) questionnaire divided into four sections: sociodemographic data of rheumatologists, knowledge, attitudes, and practices related to the diagnosis and treatment management of nr-axSpA. Results A total of 110 rheumatologists (mean age of 44±13 years, 77.3% females, median professional experience of 12 years (4, 75; 26.25 years)) participated in the survey (response rate of 25%). Most responders reported a diagnosis delay issue in spondyloarthritis (SpA) (93.6%); 70.9% of rheumatologists incorrectly regarded the 2009 Assessment of Spondyloarthritis International Society (ASAS) classification criteria for axSpA as diagnostic criteria. Rheumatologists\' awareness of recommended magnetic resonance imaging (MRI) sequences for detecting sacroiliac joint inflammation and structural changes in SpA varied significantly, from 69.1% to 14.5%. Their knowledge of additional subchondral edema cases in these joints, beyond SpA, ranged from 48.2% to 87.3%. Almost all rheumatologists believed that the use of sacroiliac MRI would contribute to the early diagnosis of axSpA (97.3%) but could also lead to false positive diagnoses, according to 47.3% of rheumatologists; 73.6% believed that incorrectly using the 2009 ASAS classification criteria as diagnostic criteria in nr-axSpA could also result in false-positive diagnoses. In their practice, 2009 ASAS classification criteria were used as diagnostic criteria in axSpA by 39.1% of rheumatologists. Of the total participants, 91.8% indicated that they approach nr-axSpA similarly to radiographic axial spondyloarthritis, with disparities in recommendations of biological therapies. Conclusion Our survey provides insight into the current status of nr-axSpA management among Moroccan rheumatologists. It also addresses concerns regarding the risk of false positive diagnoses when using the 2009 ASAS classification criteria for axSpA as diagnostic criteria by rheumatologists and the potential risk of misdiagnosis associated with excessive reliance on MRI, despite its utility for early diagnosis.
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  • 文章类型: Journal Article
    背景:患有慢性自身炎症和自身免疫性疾病的青少年和年轻人从儿科到成人医疗保健系统的结构化转变很重要。迄今为止,关于时间的数据,进程,结果,过渡过程的必要组成部分所需的资源和相关成本缺乏。
    方法:在58名患有慢性自身炎症和自身免疫性疾病的青少年的前瞻性队列研究中评估资源使用和成本,对于结构化过渡途径的关键要素,包括(i)汇编患者病史摘要,(ii)评估患者的疾病相关知识和需求,(iii)所需的教育和咨询会议,(iv)以及患者与当前儿科和未来成人风湿病学家的转诊。
    结果:58名入选患者中有49名(84.5%)完成了过渡途径并转入成人护理。从决定开始过渡过程到最终移交协商的平均时间为315±147天。对49例患者进行了转移咨询,包括与未来的成人风湿病学家共同治疗的10名患者。大多数咨询是由多学科小组进行的,中位数为三名小组成员,持续了65.5±21.3分钟。包括转院预约在内的所有咨询和教育课程的累计费用为每位患者283±164欧元。此外,协调过渡过程的成本为57.3±15.4欧元。
    结论:慢性自身炎症和自身免疫性疾病患者的结构化过渡途径既耗费资源又耗费时间,应获得足够的资金。
    BACKGROUND: A structured transition of adolescents and young adults with chronic autoinflammatory and autoimmune disorders from the pediatric to the adult health care system is important. To date, data on the time, processes, outcome, resources required for the necessary components of the transition process and the associated costs are lacking.
    METHODS: Evaluation of resource use and costs in a prospective cohort study of 58 adolescents with chronic autoinflammatory and autoimmune disorders, for the key elements of a structured transition pathway including (i) compilation of a summary of patient history, (ii) assessment of patients\' disease-related knowledge and needs, (iii) required education and counseling sessions, (iv) and a transfer appointment of the patient with the current pediatric and the future adult rheumatologist.
    RESULTS: Forty-nine of 58 enrolled patients (84.5%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 315 ± 147 days. Transfer consultations were performed in 49 patients, including 10 patients jointly with the future adult rheumatologist. Most consultations were performed by the multidisciplinary team with a median of three team members and lasted 65.5 ± 21.3 min. The cumulative cost of all consultation and education sessions performed including the transfer appointment was 283 ± 164 Euro per patient. In addition, the cost of coordinating the transition process was 57.3 ± 15.4 Euro.
    CONCLUSIONS: A structured transition pathway for patients with chronic autoinflammatory and autoimmune disorders is resource and time consuming and should be adequately funded.
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  • 文章类型: Journal Article
    目的:生殖健康相关问题的管理对于SLE患者至关重要,鉴于这是一种主要影响育龄妇女的疾病。鲜为人知的是,2020年美国风湿病学会(ACR)风湿病的生殖健康指南是如何被服务不足的人所经历的,主要是西班牙裔人口和他们的医生,因为它涉及怀孕计划和避孕对话。鉴于与非西班牙裔白人相比,该人群的计划外怀孕率很高,SLE结局更差。了解在这种情况下如何讨论生殖健康至关重要。
    方法:根据2020ACR生殖健康指南创建了一项调查,并在门诊中以英语和西班牙语分发给151名SLE患者,以确定患者的信念,生殖健康讨论的经验和局限性。使用皮尔逊χ2或费舍尔精确检验评估分类变量之间的关联,在适当的情况下,使用Wilcoxon秩和检验评估连续变量的差异。
    结果:英语语言调查受访者更有可能报告有关避孕的对话,怀孕计划和围产期药物的使用比西班牙受访者调查。三分之二的受访者依赖风湿病学家作为生殖健康信息的主要来源。
    结论:在讲英语和讲西班牙语的SLE人群之间的生殖健康对话中存在差异。需要进一步了解以阐明为什么在讲西班牙语的SLE人群中生殖健康对话的频率较低。
    OBJECTIVE: Management of reproductive health-related issues is crucial for patients with SLE, given this is a disease that primarily affects women of childbearing age. Little is known as to how the 2020 American College of Rheumatology (ACR) Reproductive Health in Rheumatic Disease Guideline is experienced by an underserved, primarily Hispanic population and their physicians as it relates to pregnancy planning and contraception conversations. Given this population experiences high rates of unplanned pregnancies and worse SLE outcomes compared with the non-Hispanic white population, it is crucial to understand how reproductive health is discussed in this setting.
    METHODS: A survey based on the 2020 ACR Reproductive Health Guideline was created and distributed in English and Spanish in the outpatient setting to 151 patients with SLE to determine patients\' beliefs, experiences and limitations with reproductive health discussions. Associations between categorical variables were evaluated using Pearson\'s χ2 or Fisher\'s exact test, as appropriate, and differences in continuous variables were assessed using Wilcoxon rank-sum test.
    RESULTS: English language survey respondents were significantly more likely to report having conversations regarding contraception, pregnancy planning and peripartum medication use than the Spanish survey respondents. Two-thirds of all respondents relied on the rheumatologist as a top source of reproductive health information.
    CONCLUSIONS: Disparities exist regarding reproductive health conversations on multiple topics between English-speaking and Spanish-speaking populations with SLE. Further understanding is needed to clarify why reproductive health conversations occur at lower frequencies in Spanish-speaking SLE populations.
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  • 文章类型: Case Reports
    背景关于类风湿结节相关性气胸的手术干预尚无共识。临床政策的决定依赖于个别临床医生的经验,通常是棘手的。病例描述患有难以治疗的类风湿性关节炎相关性气胸的50岁男性在治疗后大约2年成功地采用椎弓根孔成形术治疗而没有复发。据我们所知,这是第一次报告患者,尽管术后类风湿结节波动,但由于牢固的粘连,气胸没有复发,通过常规计算机断层扫描成像随访捕获。结论带蒂网膜成形术治疗类风湿结节相关性气胸有效,可减少气胸复发。
    Background  No consensus exists regarding surgical intervention for rheumatoid nodule-related pneumothorax. Clinical policy decisions rely on individual clinicians\' experience and are usually intractable. Case Description  A 50-year-old man with a difficult-to-treat rheumatoid arthritis-related pneumothorax was successfully treated with pedicle omentoplasty without recurrence at approximately 2 years posttreatment. To the best of our knowledge, this is the first report of a patient where pneumothorax did not recur due to firm adhesions despite fluctuating postoperative rheumatoid nodules, as captured by regular computed tomography imaging follow-ups. Conclusion  Pedicled omentoplasty is effective for rheumatoid nodule-related pneumothorax as it reduces pneumothorax recurrence.
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