关于系统性硬化症中数字的患者未得到满足的需求和治疗偏好
Giulia Bandini1, Alessia Alunno2, Begonya Alcacer-Pitarch3
1Department of Experimental and Clinical Medicine, Division of Internal Medicine, University of Florence, Florence, Italy.
Rheumatology (Oxford, England)
|March 2, 2024
概括
系统性硬化症患者经历了数字 (DUs) 的重大影响. 许多患者报告未得到满足的需求和对当前DU护理的不满,强调需要改进,基于证据的治疗途径.
科学领域:
- 类风湿病学 类风湿病学
- 皮肤病学 皮肤病学
- 患者报告的结果
背景情况:
- 数字 (DUs) 是系统性硬化症 (SSc) 的常见和衰弱的并发症.
- 酒精使用严重损害了患者的生活质量,手部功能和情绪健康.
- 了解患者对 DU 管理的看法对于改善护理至关重要.
研究的目的:
- 探索患者对系统性硬化数字 (SSc-DUs) 的看法.
- 确定SSc-DUs管理和治疗的未满足需求.
- 评估患者对当前DU护理和治疗的满意度.
主要方法:
- 一项国际在线调查分发给系统性硬化症 (SSc) 患者.
- 参与者通过患者协会和社交媒体平台招募.
- 从34个国家的患者收集了358个答案.
主要成果:
- 经常出现的DU是常见的,指尖和IP关节位置最常见.
- 醉酒导致相当大的情绪痛苦,影响日常生活和个人关系.
- 患者对DU治疗的满意度较低 (24.6%满意),疼痛和功能受限被认为是寻求替代治疗的原因. 护理差异很大,患者教育往往缺乏.
结论:
- 在系统性硬化症 (SSc) 数字 (DU) 治疗方面存在显著的国际差异.
- 获得专门的伤口护理是有限的,患者的需求往往没有得到满足.
- 迫切需要基于证据的治疗指南和改善SSc-DUs的患者教育.
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