[REIN:为患者服务的工具]
Carole Ayav1, Maxime Raffray2, Clémence Béchade3
1CIC 1433 Épidémiologie clinique, CHRU Nancy, INSERM, Université de Lorraine, Délégation à la recherche clinique et à l’innovation, 54511 Vandoeuvre-lès-Nancy Cedex, France
Nephrologie & therapeutique
|August 28, 2023
概括
法国ESKD注册 (REIN) 优先考虑患者的观点,认识到患者喜欢的透析结果,如疲劳和旅行能力不同于传统的研究标准. REIN积极纳入患者的声音,以改善护理和研究.
科学领域:
- 腎臟病學 (nephrology) 是一種醫學.
- 公共卫生 公共卫生
- 流行病学 流行病学
背景情况:
- 法国脏流行病学和信息网络 (REIN) 注册表庆祝其成立20周年.
- 对法国国家ESKD注册的贡献进行了审查,突出了患者的观点.
- 患者为中心的结果越来越被认为是透析治疗评估的关键.
研究的目的:
- 总结法国ESKD注册 (REIN) 关于患者观点的贡献.
- 强调REIN致力于将患者的声音纳入脏数据收集和研究.
- 突出患者报告结果在评估透析治疗中的重要性.
主要方法:
- 20年来对法国ESKD登记册 (REIN) 的贡献进行了审查.
- 分析患者对透析治疗的首选结果,参考脏病学标准化结果 (SONG) 倡议.
- 检查REIN纳入患者代表的情况,并支持患者数据研究.
主要成果:
- 患者对透析治疗标准的偏好 (例如,疲劳,旅行,工作影响) 与传统研究终点不同.
- 通过代表和数据收集,REIN始终整合了患者的观点.
- 使用患者收集数据的研究解决了患者护理途径和ESKD生活中的现实挑战.
结论:
- 在法国,REIN被定位为一个独特的合作伙伴工具,通过整合患者的观点为患者提供服务.
- 常规电子收集患者报告的结果可以提高治疗评估.
- 支持患者发起的研究进一步赋予患者在脏护理系统中的权力.
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