Comment intégrer les patients dans l’élaboration de programmes d’éducation thérapeutique dans l’insuffisance rénale chronique ?

Abstract

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.