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抗脂综合征的诊断和管理中的未满足需求和挑战:ReCONNET框架内的定性利益相关者研究

Savino Sciascia¹, Silvia Aguillera², Diana Marinello³

¹University Center of Excellence on Nephrologic, Rheumatologic and Rare Diseases, San Giovanni Bosco Hub Hospital, Univerisity of Turin and ASL Città di Torino, Turin, Piedmont, Italy savino.sciascia@unito.it.

Lupus science & medicine

|October 29, 2025

概括

在欧洲,抗脂综合征 (APS) 诊断不足,管理不一致. 这项研究强调了诊断,多学科护理和教育方面的关键差距,以改善患者的治疗结果和研究基础设施.

科学领域:

类风湿病学类风湿病学
罕见疾病罕见疾病
自身免疫性疾病自身免疫性疾病

背景情况:

抗脂综合征 (APS) 是一种罕见的自身免疫性疾病,导致血栓形成和妊娠并发症.
尽管更新了分类标准,但在APS管理方面仍然存在重大诊断和治疗挑战.
这项研究解决了欧洲连接组织和肌肉骨疾病参考网络 (ReCONNET) 中未满足的需求.

研究的目的:

为了识别和绘制利益相关者在欧洲各地的抗脂综合征 (APS) 护理的感知差距.
为APS管理和研究制定标准化,多学科的战略提供信息.
解决APS诊断,治疗,系统和教育方面的挑战.

主要方法:

进行了16次半结构化采访,与欧洲各地的各个利益相关者进行了采访 (2025年2月至4月).
用于临床医生,研究人员,政策专业人员和患者代表的有目的抽样.
采用专题分析,将未满足的需求分类为临床,系统和教育/研究领域.

主要成果:

超过85%的利益相关者认为延迟诊断是APS护理的主要障碍.
经常报告了当前分类标准的局限性和缺乏接触多学科团队的情况.
在APS教育,政策整合和欧洲注册表协作方面存在重大差距.

结论:

抗脂综合征 (APS) 仍然被低诊断和管理不一致,政策和教育支持不足.
利益相关者的意见揭示了关键的差距,需要欧洲范围的标准化,多学科的战略.
这些发现将指导在罕见病网络中改善APS护理和研究基础设施.

关键词:

抗体,抗心利平素抗体抗体,抗脂体,抗脂体患者护理团队的团队.

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