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评估全身性幼年特发性关节炎的治疗实践和挑战:一项综合调查分析。

Evaluating treatment practices and challenges in systemic Juvenile Idiopathic Arthritis: a comprehensive survey analysis.

机构信息

Department of Rheumatology, National Centre for Children's Health, Beijing Children's Hospital, Capital Medical University, No. 56 Nan Li Shi Lu, Beijing, 100045, China.

出版信息

Clin Rheumatol. 2024 Nov;43(11):3469-3475. doi: 10.1007/s10067-024-07111-2. Epub 2024 Sep 28.

Abstract

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.

摘要

目的

本研究旨在评估当前中国医生对全身型幼年特发性关节炎(sJIA)的诊断和治疗水平,评估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需求。

方法

2023 年 11 月至 2024 年 3 月,在中国的三级和二级儿科及综合医院开展了一项全国性调查。该调查针对具有至少 3 年专业经验的医生,共收到来自 25 个省、自治区和直辖市的 310 份有效回复。调查收集了与 sJIA 相关的诊断实践、治疗方法和专业发展的数据。通过微信收集数据,并使用描述性统计进行分析。该研究已获得北京儿童医院伦理委员会的批准,并通过电子方式获得了参与者的知情同意。

结果

调查表明,所有医生都遇到了疑似或确诊的 sJIA 病例,突显了其普遍性和相关诊断挑战。在诊断标准方面,53.9%的医生使用《全身型幼年特发性关节炎和巨噬细胞活化综合征诊治共识》,18.1%遵循国际风湿病联盟(ILAR)标准,24.8%遵循儿科风湿病国际临床试验组织(PRINTO)标准。在治疗策略方面,广泛使用了糖皮质激素和白细胞介素 6 受体单克隆抗体,后者的疗效和可接受性评分分别为 46.5%和 36.1%,为“优秀”和“满意”。主要挑战包括治疗费用高、诊断复杂、患者依从性问题以及生物制剂的潜在长期副作用。此外,126 名医生(40.7%)积极参加了 3 次以上与 sJIA 相关的学术会议或系统学习课程,表明他们对继续教育有强烈的需求,特别是在新的治疗进展和诊断技能方面。

结论

研究结果强调了在管理 sJIA 时需要标准化诊断和针对患者具体情况制定个体化治疗方案。关键点:• 调查结果强调了医生对 sJIA 的认识和治疗水平,提示应提高对该病的警惕性,关注多系统受累和鉴别诊断,以改善治疗效果和患者生活质量。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a90d/11489310/d0c4a870d478/10067_2024_7111_Fig1_HTML.jpg

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