[Patient Journey in Schizophrenia - Lessons of a Hungarian Survey]

The disorder-related experiences of schizophrenic patients are an important basis for personalized treatment. This illness experience is now described with the concept of patient journey. The patient journey shows how the symptoms and treatment interfere with the patient's personal existence and how they affect the optimal functionality. The purpose of our research was to map the patient journey in Hungary, among patients with schizophrenia, in particular how they represent their illness, what kind of met and unmet needs they have in relation to living with the disorder or their treatment. 155 patients living with schizophrenia participated in the study. The survey was conducted through self-completed questionnaires covering the following topics: first encounter with the disorder, life with the disorder, treatment expectations, experiences, support and needs. The first encounter of the patients with the disease was predominantly traumatizing, and the refusal of the diagnosis was characteristic. The inappropriate information on the disorder and the treatment might have been also responsible for this negative perception. Nevertheless, patients were expecting the information primarily from the treatment staff. The decisive majority expects from treatment the possibility of a normal life, the maintenance of stability, and according to every second patient well-being is also a basic requirement. Three-quarters of the patients think that effective medication and treatment staff are the greatest help in relation to the disorder. A significant proportion of the patients formulated the need for psychic and family support, and the need for social relations. Patients with schizophrenia have significant difficulties with financial problems, medication side effects, and stigma. Our results confirm that the subjective perception of patient journey of patients with schizophrenia is significantly determined by the met and unmet needs. The results also emphasize the importance of adequate information transfer and the therapeutic relationship.