Ayav Carole, Raffray Maxime, Béchade Clémence, Couchoud Cécile
CIC 1433 Épidémiologie clinique, CHRU Nancy, INSERM, Université de Lorraine, Délégation à la recherche clinique et à l’innovation, 54511 Vandoeuvre-lès-Nancy Cedex, France
Université de Rennes, EHESP, CNRS, INSERM, Arènes – UMR 6051, RSMS (Recherche sur les services et management en santé) – U1309 – F-35000 Rennes, France
Nephrol Ther. 2023 Aug 28;18(S2):54-58. doi: 10.1016/S1769-7255(22)00569-7.
On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the national French ESKD register was carried out. On the issue of patients’ perspectives, the following key messages were retained. As shown by the SONG (Standardised Outcomes in Nephrology) initiative, the criteria for judging the dialysis treatment that patients and care-givers prefer are not those that are traditionally found in published studies. For example, for haemodialysis, they are fatigue, ability to travel, time without dialysis, impact on family and ability to work. The concern to give the patients a voice has been at the heart of the REIN registry right from the outset. In addition, there are patient representatives in the REIN Scientific Council and the Steering Group. Although mainly focused on quantitative health data collected from professionals, REIN has also supported studies pertaining to data collected directly from patients. These studies enable addressing questions pertaining to the problems faced by patients in their care pathway and their life with the disease. The setting up of a tool for routine and electronic collection of the patients’ point of view in the evaluation of their treatment and the support of patient-initiated research contribute to positioning the REIN as a partner tool at the service of patients, unique in France.
在法国肾脏流行病学和信息网络（REIN）成立20周年之际，对法国全国终末期肾病登记处的贡献进行了一项总结工作。关于患者观点的问题，保留了以下关键信息。正如肾脏病标准化结局（SONG）倡议所表明的那样，患者和护理人员偏好的透析治疗评判标准并非传统上发表研究中所采用的标准。例如，对于血液透析而言，这些标准是疲劳程度、出行能力、无透析时间、对家庭的影响以及工作能力。从一开始，让患者发声的关切就一直是REIN登记处的核心所在。此外，REIN科学委员会和指导小组中有患者代表。尽管REIN主要侧重于从专业人员那里收集的定量健康数据，但它也支持与直接从患者那里收集的数据相关的研究。这些研究有助于解决与患者在其护理过程以及患病生活中所面临问题相关的疑问。在评估患者治疗时建立用于常规和电子收集患者观点的工具以及支持患者发起的研究，有助于将REIN定位为服务于患者的伙伴工具，这在法国是独一无二的。
