一项跨国调查调查了系统性硬化症中关于质子抑制剂的未满足需求和患者观点

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Updated: Jul 8, 2025

06:46

Simultaneous Laryngopharyngeal and Conventional Esophageal pH Monitoring

Published on: December 14, 2020

2.8K

Giulia Bandini¹, Alessia Alunno², Filipe O Pinheiro³

¹Department of Experimental and Clinical Medicine, Division of Internal Medicine, University of Florence, AOUC, Florence, Italy.

Arthritis care & research

|December 19, 2023

概括

系统性硬化症患者经常使用质子抑制剂 (PPI) 治疗GERD,但许多人担心副作用和长期安全性. 未满足的需求包括更好的教育和讨论手术等替代治疗方法.

科学领域:

胃肠病学胃肠病学
类风湿病学类风湿病学
药理学药理学是指药理学的学科.

背景情况:

质子抑制剂 (PPI) 是系统性硬化症 (SSc) 中胃食道逆流性疾病 (GERD) 的基石治疗.
对于SSc患者来说,充分的症状控制和PPE的长期安全性仍然是重大问题.
患者报告的治疗结果和未满足的关于SScPPI治疗的需求尚未得到充分了解.

研究的目的:

确定接受PPI治疗的SSc患者所经历的主要问题和投诉.
了解SSc患者与GERD的PPI治疗相关的未满足需求.

主要方法:

一项在线调查通过患者协会和社交媒体在国际上传播.
从14个国家使用PPI的系统性硬化症患者收集了301个有效的反应.

主要成果:

虽然89%的人报告说症状有所改善,但79%的人表示担心PPI的副作用,尽管只有19%的人报告说他们经历了这些副作用.
多重PPI使用很常见 (51%),85%的人在网上寻求信息,只有12%的人讨论了手术选择.
46%的人愿意考虑为GERD进行手术,但存在重大担忧.

结论:

在SSc中,PPI的处方是异质的,组合疗法是常见的 (~40%).
SSc 患者对 PPI 的副作用有很大的担忧,并且经常忽视正规教育,严重依赖在线信息.
对GERD的手术干预很少被讨论,患者对它们表示担忧.

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