Heart failure is a severe disease with a poor prognosis despite major therapeutic progresses achieved recently. A key factor is the high number of hospitalizations for heart failure, considered as being avoidable, since they are related to a lack of adequate management of the patients. Several therapeutic education programs focused on heart failure are in progress. Even though these programs aim at making patients an active agent managing the disease, data on patient's level of knowledge and experience regarding heart failure are scarce. The aim of our study was to analyze the patient's perception of the disease and his/her practices about this disease, as well as the treatments used.
Methods: we included 350 consecutive patients and analyzed their level of knowledge and experience using a questionnaire, as well as interviews performed by nurses and physicians. This initial assessment was followed by a second assessment after an 8-hours course in 2 days, made by the multidisciplinary education team of R. Dubos hospital (including physicians, nurses, physiotherapists, dietician).
Results: in contrast to tests assessing the knowledge on the disease, which were in overall satisfactory, the results on the level of knowledge on treatments and heart failure pathways were poor. The courses improve significantly the level of knowledge in all domains, whatever would the age and the level of patient's demand for information be. The analysis of the patient's conception of his/her own disease reveals the lack of knowledge on the severity of heart failure. Frequently, the effect of treatments is considered as poorly efficient, and a substantial fraction of these patients have underlying depressive moods.
Conclusion: the understanding of the level of knowledge and the perception of the patient regarding his/her disease is primordial for setting educational structures and programs. However, the patient's conception of the disease is different from care providers. It is therefore essential to assess the patient's conception by an educational diagnosis prior to implement adapted education programs, in order to improve durably the patient's knowledge, at every age.