Education of patients with homocystinuria

My bachelor thesis deals with the issue of education of patients and parents of underage patients with homocystinuria. It focuses on the nursing role of a nurse in a metabolic ambulance, where these patients are dispensarized. The theoretical part describes inherited metabolic disorders (IMD), especially homocystinuria, and characterizes general education as well as education aimed at patients with homocystinuria. The practical part was realized by questionnaire survey of patients and parents (legal representatives) of minors by anonymous non-standardized questionnaire of my own composition. The criterion for addressing and selecting respondents was the confirmed diagnosis of homocystinuria. Due to the small incidence (1:83 000) of this disease in the Czech Republic (CR), there were twenty respondents. The aim of the research was to find out if these patients are sufficiently educated and if the patients prefer other forms of education in this area than they have been used to date. The individual results of research were analyzed and presented in the form of graphs and tables. The results of the questionnaire survey showed that education is realized in a comprehensible form, and patients consider education as an important part of the treatment. Patients were satisfied with the form, course and..