评估系统性幼年特发性关节炎的治疗方法和挑战:综合调查分析。

IF 2.9 3区 医学 Q2 RHEUMATOLOGY
Clinical Rheumatology Pub Date : 2024-11-01 Epub Date: 2024-09-28 DOI:10.1007/s10067-024-07111-2
Xiaohua Tan, Xiaozhen Zhao, Jianghong Deng, Chao Li, Junmei Zhang, Shipeng Li, Caifeng Li
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引用次数: 0

摘要

研究目的本研究旨在评估目前医生对系统性幼年特发性关节炎(sJIA)的诊断和管理,评估在诊断和治疗中遇到的挑战,并确定管理sJIA的医生的教育需求和专业发展参与情况:方法:2023 年 11 月至 2024 年 3 月,在中国的三级和二级儿科医院及综合医院开展了一项全国性调查。调查对象为具有至少三年专科经验的医生,共收到来自 25 个省、自治区和直辖市的 310 份有效答卷。调查收集了与sJIA相关的诊断实践、治疗方法和专业发展方面的数据。数据收集通过微信进行,统计分析采用描述性统计。调查获得了北京儿童医院伦理委员会的伦理批准,并由参与者提供了电子版知情同意书:调查显示,所有医生都遇到过疑似或确诊的 sJIA 病例,这凸显了其发病率和相关的诊断难题。在诊断标准方面,53.9%的医生采用了《sJIA和巨噬细胞活化综合征诊断和治疗共识》,18.1%的医生遵循了国际风湿病学协会联盟(ILAR)的标准,24.8%的医生遵循了儿科风湿病学国际试验组织(PRINTO)的标准。在治疗策略方面,糖皮质激素和IL-6受体单克隆抗体得到了广泛应用,后者分别获得了46.5%和36.1%的 "优秀 "和 "满意 "评级,显示出较高的疗效和接受度。主要挑战包括治疗成本高、诊断复杂、患者依从性问题以及生物制剂潜在的长期副作用。此外,有126名医生(40.7%)积极参加了三次以上与sJIA相关的学术会议或系统学习课程,这表明对持续教育的需求很强烈,尤其是在新的治疗进展和诊断技能方面:结论:调查结果表明,在管理 sJIA 时,有必要进行标准化诊断,并根据患者的具体情况制定个性化治疗方案。要点 - 该调查突出了sJIA在医生中的流行程度和临床挑战,强调了警惕诊断、多系统参与和鉴别诊断对改善治疗效果和患者生活质量的重要性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Evaluating treatment practices and challenges in systemic Juvenile Idiopathic Arthritis: a comprehensive survey analysis.

Objective: This study aims to assess current diagnostic and management for systemic Juvenile Idiopathic Arthritis (sJIA) among physicians, evaluate the challenges encountered in diagnosis and treatment, and identify the educational needs and professional development engagements of physicians managing sJIA.

Methods: A nationwide survey was conducted from November 2023 to March 2024 across tertiary and secondary pediatric and general hospitals in China. The survey targeted physicians with at least three years of specialty experience, resulting in 310 valid responses from 25 provinces, autonomous regions, and municipalities. The survey collected data on diagnostic practices, treatment approaches, and professional development related to sJIA. Data collection was facilitated through WeChat, and statistical analysis was performed using descriptive statistics. Ethical approval was obtained from the Ethics Committee of Beijing Children's Hospital, with informed consent provided electronically by participants.

Results: The survey indicated that all physicians encountered suspected or confirmed cases of sJIA, highlighting its prevalence and the diagnostic challenges associated. Regarding diagnostic standards, 53.9% of physicians used the "Consensus on the Diagnosis and Treatment of sJIA and Macrophage Activation Syndrome," 18.1% followed the International League of Associations for Rheumatology (ILAR) standards, and 24.8% adhered to the Pediatric Rheumatology International Trials Organization (PRINTO) standards. In treatment strategies, glucocorticoids and IL-6 receptor monoclonal antibodies were extensively used, with the latter receiving "excellent" and "satisfactory" ratings of 46.5% and 36.1%, respectively, demonstrating high efficacy and acceptance. Main challenges included high treatment costs, complexity of diagnosis, patient compliance issues, and potential long-term side effects of biologics. Additionally, 126 doctors (40.7%) actively participated in more than three academic conferences or systematic learning courses related to sJIA, indicating a strong demand for ongoing education, particularly in new treatment developments and diagnostic skills.

Conclusion: The findings emphasize the necessity for standardized diagnosis and customized treatment plans tailored to patient-specific conditions in managing sJIA. Key Points • The survey highlights the prevalence and clinical challenges of sJIA among physicians, emphasizing the importance of vigilant diagnosis, multi-system involvement, and differential diagnosis to improve treatment outcomes and patient quality of life.

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来源期刊
Clinical Rheumatology
Clinical Rheumatology 医学-风湿病学
CiteScore
6.90
自引率
2.90%
发文量
441
审稿时长
3 months
期刊介绍: Clinical Rheumatology is an international English-language journal devoted to publishing original clinical investigation and research in the general field of rheumatology with accent on clinical aspects at postgraduate level. The journal succeeds Acta Rheumatologica Belgica, originally founded in 1945 as the official journal of the Belgian Rheumatology Society. Clinical Rheumatology aims to cover all modern trends in clinical and experimental research as well as the management and evaluation of diagnostic and treatment procedures connected with the inflammatory, immunologic, metabolic, genetic and degenerative soft and hard connective tissue diseases.
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