rheumatologists

风湿病学家
  • 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: Letter
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  • 文章类型: Journal Article
    利妥昔单抗(RTX)是一种嵌合单克隆抗体,靶向B细胞上的CD20抗原,用于各种自身免疫性疾病。在这项研究中,我们旨在通过一项调查来衡量儿科风湿病学家对使用RTX的认识.在2023年2月至3月之间,通过电子邮件向土耳其的儿科风湿病专家发送了42个问题的调查。参与者被问及他们更喜欢使用RTX的诊断和系统参与,他们进行了哪些常规测试,疫苗接种政策,以及输注期间或之后发生的不良事件。41位儿科风湿病学家回答了这项调查。对于系统性红斑狼疮(87.8%)和ANCA相关性血管炎(9.8%),他们最常使用RTX。在管理RTX之前,95%的临床医生检查了肾功能和肝功能检查,以及免疫球蛋白水平。治疗前最常检测的肝炎标志物是HBsAg和抗HBs抗体(97.6%),而85.4%的风湿病学家检查了抗HCV。临床医生(31.4%)报告说,他们在灭活疫苗后推迟RTX输注2周。61%的风湿病学家报告说,在活疫苗接种后1个月开始RTX治疗,而26.8%的人等待了6个月。最常见的不良事件是RTX输注期间的过敏反应(65.9%),低球蛋白血症(46.3%),和皮疹(36.6%)。如果RTX治疗后出现低丙种球蛋白血症,医师报告称,在静脉注射免疫球蛋白后,他们经常(58.5%)继续使用RTX.
    结论:近年来,RTX已成为小儿风湿病的常用治疗选择。临床医生如疫苗接种和常规测试之间的治疗管理可能有所不同。
    背景:•在利妥昔单抗治疗过程中,临床医生应注意治疗前的具体考虑,在管理期间,以及治疗后的患者监测。
    背景:•临床医生在RTX治疗的管理方面存在实践差异。这些实践差异有可能影响最佳治疗过程。•本研究强调儿科风湿病RTX治疗需要标准化指南,特别是疫苗接种政策和常规测试。
    Rituximab (RTX) is a chimeric monoclonal antibody that targets the CD20 antigen on B cells and is used in various autoimmune disorders. In this study, we aimed to measure the awareness of pediatric rheumatologists about the use of RTX through a survey. Between February and March 2023, a 42-question survey was sent via email to pediatric rheumatology specialists in Turkey. The participants were questioned for which diagnoses and system involvement they preferred to use RTX, which routine tests they performed, vaccination policy, and adverse events that occurred during or after infusion. Forty-one pediatric rheumatologists answered the survey. They prescribed RTX most frequently for systemic lupus erythematosus (87.8%) and ANCA-associated vasculitis (9.8%). Prior to the administration of RTX, 95% of clinicians checked renal and liver function tests, as well as immunoglobulin levels. The most frequently tested hepatitis markers before treatment were HBsAg and anti-HBs antibody (97.6%), while 85.4% of rheumatologists checked for anti-HCV. Clinicians (31.4%) reported that they postpone RTX infusion 2 weeks following an inactivated vaccine. Sixty-one percent of rheumatologists reported starting RTX treatment 1 month after live vaccines, while 26.8% waited 6 months. The most frequent adverse events were an allergic reaction during RTX infusion (65.9%), hypogammaglobulinemia (46.3%), and rash (36.6%). In the event of hypogammaglobulinemia after RTX treatment, physicians reported that they frequently (58.5%) continued RTX after intravenous immunoglobulin administration.
    CONCLUSIONS: RTX has become a common treatment option in pediatric rheumatology in recent years. Treatment management may vary between clinician such as vaccination and routine tests.
    BACKGROUND: • During the course of rituximab therapy, clinicians should be attentive to specific considerations in pre-treatment, during administration, and in post-treatment patient monitoring.
    BACKGROUND: • There are differences in practice among clinicians in the management of RTX therapy. These practice disparities have the potential to impact the optimal course of treatment. • This study highlights that standardized guidelines are needed for RTX treatment in pediatric rheumatology, particularly for vaccination policies and routine tests.
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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
    目标:鉴于全球风湿病学劳动力短缺,对风湿病评估的需求往往超过了及时获得治疗的能力。患者转诊的准确分类对于确保适当利用有限资源很重要。我们使用标准化方案评估了物理治疗师主导的分诊的可行性,在识别炎症性关节炎(IA)的病例中,与通常的风湿病学家对关节痛的转诊进行分类相比,在三级护理风湿病诊所。
    方法:我们执行了单中心,prospective,非致盲,随机化,平行组可行性研究,以1:1的比例随机转诊,由物理治疗师主导与普通风湿病学家分诊。在转介收据上收集了标准化信息,分诊,和诊所访问。风湿病学家的诊断被认为是诊断IA的金标准。
    结果:102个转诊随机分配给物理治疗师主导的分诊组,101个转诊给风湿病专家组。在物理治疗师主导的手臂上,确诊为紧急的转诊中有65%被确认为IA,而风湿病学家的转诊率为60%(p=0.57),表明识别IA的准确性相似。在物理治疗师主导的分诊组24对8(p=0.002)中,更多的转诊减少,导致半紧急分诊组6对23(p<0.003)。一例IA(风湿病专家手臂)被错误地分类,导致首次评估的时间明显延迟。
    结论:物理治疗师主导的分诊是可行的,像风湿病学家对关节痛的转诊一样可靠,并导致需要临床就诊的患者明显减少。
    OBJECTIVE: Given global shortages in the rheumatology workforce, the demand for rheumatology assessment often exceeds the capacity to provide timely access to care. Accurate triage of patient referrals is important to ensure appropriate utilization of finite resources. We assessed the feasibility of physiotherapist (PT)-led triage using a standardized protocol in identifying cases of inflammatory arthritis (IA), as compared to usual rheumatologist triage of referrals for joint pain, in a tertiary care rheumatology clinic.
    METHODS: We performed a single-center, prospective, nonblinded, randomized, parallel-group feasibility study with referrals randomized in a 1:1 ratio to either PT-led vs usual rheumatologist triage. Standardized information was collected at referral receipt, triage, and clinic visit. Rheumatologist diagnosis was considered the gold standard for diagnosis of IA.
    RESULTS: One hundred two referrals were randomized to the PT-led triage arm and 101 to the rheumatologist arm. In the PT-led arm, 65% of referrals triaged as urgent were confirmed to have IA vs 60% in the rheumatologist arm (P = 0.57), suggesting similar accuracy in identifying IA. More referrals were declined in the PT-led triage arm (24 vs 8, P = 0.002), resulting in fewer referrals triaged as semiurgent (6 vs 23, P = 0.003). One case of IA (rheumatologist arm) was incorrectly triaged, resulting in significant delay in time to first assessment.
    CONCLUSIONS: PT-led triage was feasible, appeared as reliable as rheumatologist triage of referrals for joint pain, and led to significantly fewer patients requiring in-clinic visits. This has implications for waitlist management and optimal rheumatology resource utilization.
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  • 文章类型: Journal Article
    目的:怀疑类风湿关节炎(RA)患者的早期转诊对预后有影响。我们的研究旨在评估从初级保健医生(PCP)转诊给风湿病专家的手关节痛患者的临床特征。
    方法:描述性,观察,进行前瞻性队列研究.我们包括首次因手关节痛而接受PCP检查的患者。人口统计学和欧洲风湿病学协会联盟对关节痛的怀疑进展为RA的标准以及七个补充问题。转介的时间,用自动挤压试验机在双手掌指关节中引起疼痛所需的压力,并记录了上次对随访患者的病历进行审查时确定的诊断。主要结果是转诊给风湿病专家。
    结果:共纳入109例患者。平均年龄为49.9岁,81.6%是女性。30.3%被转诊给风湿病专家。转诊时间中位数为38天。与转诊风湿病专家相关的主要临床特征是“午夜后出现最严重的症状”(OR=6.29)和“握拳困难”(OR=3.67)。孤立的“掌指关节挤压试验阳性”与风湿病学家的转诊无关。
    结论:在接受PCP治疗的手关节痛患者中,那些在午夜之后症状最严重且难以握拳的人更有可能被转诊到风湿病诊所。隔离阳性挤压试验不是转诊的参数,只有在临床怀疑关节痛的情况下才应进行。
    OBJECTIVE: Early referral of patients with suspicious of rheumatoid arthritis (RA) has an impact on prognosis. Our study aimed to evaluate the clinical characteristics of patients with hands arthralgia who were referred from primary care physicians (PCP) to the rheumatologist.
    METHODS: A descriptive, observational, prospective cohort study was performed. We included patients who visited a PCP for the first time for hands arthralgia. Demographics and the European Alliance of Associations for Rheumatology criteria for arthralgia suspicious for progression to RA plus seven complementary questions, the time to referral, the pressure needed to provoke pain with an automatic squeeze test machine in the metacarpophalangeal joints of both hands, and the diagnoses established at the last review of medical charts from patients on follow-up were documented. The primary outcome was the referral to a rheumatologist.
    RESULTS: A total of 109 patients were included. The mean age was 49.9 years, 81.6% were women. 30.3% were referred to the rheumatologist. The time to referral was a median of 38 days. The main clinical characteristics associated with referral to the rheumatologist were the \"most severe symptoms are present after midnight\" (OR=6.29) and the \"difficulty with making a fist\" (OR=3.67). An isolated \"positive squeeze test of metacarpophalangeal joints\" was not associated with a referral to the rheumatologist.
    CONCLUSIONS: Among patients with hands arthralgia who attended PCP, those with most severe symptoms after midnight and difficulty making a fist were more likely to be referred to the rheumatology clinic. Isolated positive squeeze tests are not a parameter for referral, it should only be performed if arthralgia is clinically suspected.
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  • 文章类型: Journal Article
    目的:探讨单独的实验室项目在系统性红斑狼疮(SLE)分类中的表现。
    方法:我们的队列包括352和385(对照)患有和不患有SLE的患者。这项研究评估了美国风湿病学会(ACR)-1997,系统性狼疮国际合作诊所(SLICC)-2012,欧洲抗风湿病联盟(EULAR)/ACR-2019和系统性红斑狼疮风险概率指数(SLERPI)仅使用实验室项目,包括血液和尿液检查结果.
    结果:实验室项目/总项目的中位数为66.7%,75.0%,60.4%,在ACR-1997、SLICC-2012、EULAR/ACR-2019和SLERPI中占77.4%,分别。在单独包括实验室项目之后,ACR-1997,SLICC-2012,EULAR/ACR-2019和SLERPI的敏感性为31.3%(95%置信区间[CI]:26.4%-36.4%),79.8%(95%CI:75.3%-83.9%),75.9%(95%CI:71.0%-80.2%),和85.2%(95%CI:81.1%-88.8%),分别。我们引用了SLERPI并删除了额外的限制,即,SLICC-2012标准只需要满足至少四个项目(mSLICC-2012)和EULAR/ACR-2019标准需要≥10分(mEULAR/ACR-2019)才有资格获得SLE分类。mSLICC-2012和mEULAR/ACR-2019标准,包括单独的实验室项目,新发现的13和25名患者,分别。仅基于实验室项目,mSLICC-2012,mEULAR/ACR-2019和SLERPI的联合检测发现348例患者的敏感性改善为90.6%(95%CI:87.1%-93.5%).患者,他们是根据mEULAR/ACR-2019标准分类的,都符合其他标准。
    结论:单独纳入实验室项目在临床上是可行的,有助于鉴别SLE。SLERPI和SLICC-2012,仅使用实验室项目,与EULAR/ACR-2019相比,更值得在临床推广。要点•实验室项目在SLE分类标准中起着至关重要的作用,仅纳入实验室项目在临床上是可行的,以帮助鉴定SLE。•SLERPI和SLICC-2012,仅使用实验室项目,与EULAR/ACR-2019相比,在临床上更值得推广,两者联合使用可进一步提高敏感性。•评估实验室指标的相对简单性可以帮助非风湿病学家和缺乏经验的风湿病学家更快地识别SLE,从而降低患者延迟诊断的风险。
    OBJECTIVE: To explore the performance of laboratory items alone in systemic lupus erythematosus (SLE) classification.
    METHODS: Our cohort consisted of 352 and 385 (control) patients with and without SLE. This study evaluated the performance of the American College of Rheumatology (ACR)-1997, Systemic Lupus International Collaborating Clinics (SLICC)-2012, European League Against Rheumatism (EULAR)/ACR-2019, and Systemic Lupus Erythematosus Risk Probability Index (SLERPI) using laboratory items alone, including blood and urine test results.
    RESULTS: The median ratio of laboratory items/total items was 66.7%, 75.0%, 60.4%, and 77.4% in ACR-1997, SLICC-2012, EULAR/ACR-2019, and SLERPI, respectively. After including laboratory items alone, the sensitivity of ACR-1997, SLICC-2012, EULAR/ACR-2019, and SLERPI was 31.3% (95% confidence interval [CI]: 26.4%-36.4%), 79.8% (95% CI: 75.3%-83.9%), 75.9% (95% CI: 71.0%-80.2%), and 85.2% (95% CI: 81.1%-88.8%), respectively. We referenced the SLERPI and removed the additional restrictions, i.e., SLICC-2012 criteria only needs to fulfill at least four items (mSLICC-2012) and EULAR/ACR-2019 criteria needs to have ≥ 10 points (mEULAR/ACR-2019) to qualify for SLE classification. The mSLICC-2012 and mEULAR/ACR-2019 criteria, including laboratory items alone, newly identified 13 and 25 patients, respectively. Based on laboratory items alone, the combination of mSLICC-2012, mEULAR/ACR-2019, and SLERPI identified 348 patients with an improved sensitivity of 90.6% (95% CI: 87.1%-93.5%). Patients, who were classified according to the mEULAR/ACR-2019 criteria, all met the other criteria.
    CONCLUSIONS: Incorporating laboratory items alone was clinically feasible to help identify SLE. SLERPI and SLICC-2012, using laboratory items alone, were more worthwhile to promote in the clinic compared with EULAR/ACR-2019. Key Points • Laboratory items play a crucial role in the SLE classification criteria, and incorporating laboratory items alone was clinically feasible to help in the identification of SLE. • The SLERPI and SLICC-2012, using laboratory items alone, were more worthwhile to promote in the clinic compared with EULAR/ACR-2019, and the combination of the two could further improve the sensitivity. • The relative simplicity of evaluating laboratory indices may help nonrheumatologists and inexperienced rheumatologists to identify SLE more quickly, thereby reducing the risk of delayed diagnosis in patients.
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  • 文章类型: Journal Article
    目的:由于需求的增加和劳动力短缺的增加,目前被风湿病学家转诊的患者面临数月的低效等待时间。我们试行了对疑似轴性脊柱关节炎(axSpA)患者的预评估,结合学生主导的诊所和远程医疗(症状评估,症状监测和家庭毛细血管自我采样),以改善获得风湿病护理的机会。这项研究的目的是探索(1)当前获得axSpA护理的挑战和(2)患者的第一手经验。
    方法:嵌入临床试验中,本研究基于对疑似axSpA患者(n=20)的定性访谈.通过定性内容分析对数据进行分析。
    结果:学生主导的诊所被认为是高质量的护理,与传统的风湿病学家主导的访问相当。患者表示,他们与学生的互动灌输了一种信任感。历史学习和考试被认为是全面而细致的。远程医疗工具被视为赋权,在家中提供即时和持续的症状评估。患者报告电子问卷缺乏特异性,阻碍准确的反应。患者要求提供评论区以补充问卷答复。一些患者报告接受帮助以完成采血。
    结论:患者获得风湿病治疗的负担越来越沉重。包括学生主导的诊所和远程医疗在内的预评估被患者高度接受。患者访谈提供了有价值的深入反馈,以改善试点的患者路径。
    OBJECTIVE: Patients referred to rheumatologists are currently facing months of inefficient waiting time due to the increasing demand and rising workforce shortage. We piloted a pre-assessment of patients with suspected axial spondyloarthritis (axSpA) combining student-led clinics and telemedicine (symptom assessment, symptom monitoring and at-home capillary self-sampling) to improve access to rheumatology care. The aim of this study was to explore (1) current challenges accessing axSpA care and (2) patients\' first-hand experiences.
    METHODS: Embedded within a clinical trial, this study was based on qualitative interviews with patients with suspected axSpA (n = 20). Data was analysed via qualitative content analysis.
    RESULTS: Student-led clinics were perceived as high-quality care, comparable to conventional rheumatologist-led visits. Patients expressed that their interactions with the students instilled a sense of trust. History-taking and examinations were perceived as comprehensive and meticulous. Telehealth tools were seen as empowering, offering immediate and continuous access to symptom assessment at home. Patients reported a lack of specificity of the electronic questionnaires, impeding accurate responses. Patients requested a comments area to supplement questionnaire responses. Some patients reported receiving help to complete the blood collection.
    CONCLUSIONS: Patients\' access to rheumatology care is becoming increasingly burdensome. Pre-assessment including student-led clinics and telemedicine was highly accepted by patients. Patient interviews provided valuable in-depth feedback to improve the piloted patient pathway.
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  • 文章类型: Journal Article
    背景:幼年特发性关节炎(JIA)是一种普遍存在的儿童慢性关节炎,经常坚持到成年。随着这些患者从儿科过渡到成人医疗保健系统,有效的过渡护理变得至关重要。尽管过渡护理的概念得到了认可,它在现实世界中的实施仍未得到充分探索。本研究旨在评估医疗保健提供者对JIA患者的过渡护理的想法和实践。
    方法:对土耳其的儿科和成人风湿病专家进行了横断面调查。基于美国儿科学会的过渡护理的六个核心要素,调查包括86个问题。受访者的人口统计数据,对过渡护理的态度,并对实际执行情况进行了评估。
    结果:调查包括48位风湿病专家,43.7%的人有过渡诊所。建立过渡计划的主要障碍是缺乏成年风湿病学家,缺乏时间,和财政限制。只有23.8%的人拥有过渡护理的多学科团队。与会者同意儿科和成人医疗保健服务之间协调与合作的重要性。过渡过程的时机各不相同,对何时启动或完成它没有共识。与会者主张提供适合当地条件的经过验证的问卷,以评估过渡准备情况。
    结论:该研究揭示了土耳其JIA患者过渡期护理的挑战和观点。尽管有公认的需求和意图,由于各种障碍,实际实施仍然有限。文化因素和资源约束影响着转型过程。在承认现有缺点的同时,该研究为进一步努力改善过渡期护理并确保JIA患者过渡到成年期的结局奠定了基础.
    BACKGROUND: Juvenile idiopathic arthritis (JIA) is a prevalent childhood chronic arthritis, often persisting into adulthood. Effective transitional care becomes crucial as these patients transition from pediatric to adult healthcare systems. Despite the concept of transitional care being recognized, its real-world implementation remains inadequately explored. This study aims to evaluate the thoughts and practices of healthcare providers regarding transitional care for JIA patients.
    METHODS: A cross-sectional survey was conducted among pediatric and adult rheumatologists in Turkey. Based on the American Academy of Pediatrics\' six core elements of transitional care, the survey included 86 questions. The respondents\' demographic data, attitudes towards transitional care, and practical implementation were assessed.
    RESULTS: The survey included 48 rheumatologists, with 43.7% having a transition clinic. The main barriers to establishing transition programs were the absence of adult rheumatologists, lack of time, and financial constraints. Only 23.8% had a multidisciplinary team for transition care. Participants agreed on the importance of coordination and cooperation between pediatric and adult healthcare services. The timing of the transition process varied, with no consensus on when to initiate or complete it. Participants advocated for validated questionnaires adapted to local conditions to assess transition readiness.
    CONCLUSIONS: The study sheds light on the challenges and perspectives surrounding transitional care for JIA patients in Turkey. Despite recognized needs and intentions, practical implementation remains limited due to various barriers. Cultural factors and resource constraints affect the transition process. While acknowledging the existing shortcomings, the research serves as a ground for further efforts to improve transitional care and ensure better outcomes for JIA patients transitioning into adulthood.
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  • 文章类型: Journal Article
    目的:系统性红斑狼疮(SLE)发作与损害增加和健康相关生活质量下降有关。我们假设医生和患者对狼疮发作的看法不一致。在这项研究中,我们旨在探讨患者和医师对SLE耀斑的描述.
    方法:我们对SLE患者(1997年ACR或SLICC标准)和执业风湿病学家进行了深入访谈,进行了一项定性的描述性研究。采访是录音的,转录,并使用应用专题分析法进行分析。
    结果:42例SLE患者,代表一系列狼疮活动,完成面试。大多数人将耀斑症状描述为关节痛,疲劳,和皮肤问题持续几天。很少包括客观标志或实验室措施,当可用时,作为耀斑的特征。我们采访了来自10个学术机构和3个社区的13位风湿病学家。绝大多数人将耀斑定义为狼疮疾病活动增加或恶化,略多于一半需要客观发现。大约一半的风湿病学家包括疲劳,疼痛或其他患者报告的症状。
    结论:患者和医生对耀斑的描述不同。SLE参与者认为耀斑是几天的疲劳,疼痛,和特点。提供者将耀斑定义为临床SLE活动增加的时期。我们的发现表明,目前对耀斑的定义可能不足以整合两种看法。需要进一步研究以了解患者耀斑的病理生理学以及将患者观点纳入临床评估的最佳方法。
    OBJECTIVE: Systemic lupus erythematosus (SLE) flares are associated with increased damage and decreased health-related quality of life. We hypothesized that there is discordance between physicians\' and patients\' views of SLE flare. In this study, we aimed to explore patient and physician descriptions of SLE flares.
    METHODS: We conducted a qualitative descriptive study using in-depth interviews with a purposeful sample of patients with SLE (who met 1997 American College of Rheumatology or Systemic Lupus International Collaborating Clinics criteria) and practicing rheumatologists. Interviews were audio-recorded, transcribed, and analyzed using applied thematic analysis.
    RESULTS: Forty-two patient participants with SLE, representing a range of SLE activity, completed interviews. The majority described flare symptoms as joint pain, fatigue, and skin issues lasting several days. Few included objective signs or laboratory measures, when available, as features of flare. We interviewed 13 rheumatologists from 10 academic and 3 community settings. The majority defined flare as increased or worsening SLE disease activity, with slightly more than half requiring objective findings. Around half of the rheumatologists included fatigue, pain, or other patient-reported symptoms.
    CONCLUSIONS: Patients and physicians described flare differently. Participants with SLE perceived flares as several days of fatigue, pain, and skin issues. Providers defined flares as periods of increased clinical SLE activity. Our findings suggest the current definition of flare may be insufficient to integrate both perceptions. Further study is needed to understand the pathophysiology of patient flares and the best way to incorporate patients\' perspectives into clinical assessments.
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