Ayav Carole, Empereur Fabienne, Kessler Michèle
Réseau Nephrolor, CHU de Nancy, allée du Morvan, 54500 Vandœuvre-lès-Nancy, France.
Association Evalor, CHU de Nancy, 54000 Nancy, France.
Nephrol Ther. 2013 Feb;9(1):26-31. doi: 10.1016/j.nephro.2012.09.008. Epub 2013 Jan 14.
The objective was to take into consideration patient concerns for an original qualitative approach to the elaboration of three therapeutic education programs (TEP) designed for chronic renal failure patients, transplantation recipients, and dialysis patients. Four discussion groups involved patients with non-terminal chronic renal failure (one group), transplantation recipients (one group), and dialysis patients (two groups). Topics discussed were patients' knowledge of the TEP and their disease and treatment, patients' expectations concerning the educative content and the organisation of the TEP. For all levels of chronic renal failure, patient expectations focused on nutrition, treatments, and the social and occupational supportive network. Patients with non-terminal renal failure also expressed their expectations concerning the comprehension of laboratory tests and the course of their renal disease. Transplantation recipients wanted to strengthen their knowledge about graft evolution and immunosuppression. Dialysis patients expressed their concerns about disease announcement and the decision for dialysis. While certain topics were common, patients were preoccupied by different problems depending on their degree of renal insufficiency. Nephrolor thus integrated these different levels of concern into the elaboration of E'Dire programs designed for non-terminal renal failure patients and EDUGREFFE for transplant recipients. The third program designed for dialysis patients is currently in the development phase.
目的是考虑患者的关切,采用一种原创的定性方法来制定针对慢性肾衰竭患者、移植受者和透析患者的三个治疗教育项目(TEP)。四个讨论小组分别涉及非终末期慢性肾衰竭患者(一组)、移植受者(一组)和透析患者(两组)。讨论的主题包括患者对TEP及其疾病和治疗的了解,患者对教育内容和TEP组织的期望。对于所有慢性肾衰竭阶段,患者的期望集中在营养、治疗以及社会和职业支持网络方面。非终末期肾衰竭患者还表达了他们对实验室检查理解和肾病病程的期望。移植受者希望加强对移植物演变和免疫抑制的了解。透析患者表达了他们对疾病告知和透析决策的担忧。虽然某些主题是共通的,但患者因肾功能不全程度不同而关注不同的问题。因此,Nephrolor将这些不同层面的关切纳入为非终末期肾衰竭患者设计的E'Dire项目以及为移植受者设计的EDUGREFFE项目的制定过程中。为透析患者设计的第三个项目目前正处于开发阶段。