Digital narrative medicine for the personalization of epilepsy care pathways

Abstract

Among neurological conditions, epilepsy is the disorder best suited to a narrative approach. In epilepsy, the disease, i.e., the condition from the clinical and therapeutic point of view, the illness, the personal experience and impact of the condition, and the sickness, the representations, and social imaginary of epilepsy, are strongly interdependent. Within this context, the Italian League Against Epilepsy (LICE) has launched a multiyear narrative program in Italy resulting in the foundation of a specific Study Group on Narrative Medicine in Epileptology. The Epimena Study is part of this program and involves the "Epilepsy Center, Department of Human Neurosciences, Sapienza University of Rome and Umberto 1° Hospital". The study consists of a pilot project whose aim is to assess the usefulness and feasibility of integrating narrative medicine methodologies into routine clinical practice through a digital platform. The carrying out of the study is based on the acquisition of narrative elements of the patient that the referring doctor uses, integrating them with clinical data, to share and customize the diagnostic-therapeutic pathway of patients. The Epimena Study preliminary results look encouraging. Over 12 months, 57% of the invited patients (37 out of a total of 65) decided to formalize their registration in the digital diary, and 46% responded to one or more narrative prompt generating the story of their experience. Every patient story was then analyzed according to a methodology (Illness Digital StoryMap - IDS) that made it possible to detect the existential impact of the disease and the perception of care. Patients' overall judgment on the project was positive. Through it, they were able to better focus on themselves, bringing out and communicating information to the physician that otherwise would not have been taken into consideration. The majority of patients involved believe that the methodology should be included in the regular clinical practice or in any case would like to continue using it. The data collected confirmed that the time spent on story sharing contributed objectively to a clinical practice of greater quality and effectiveness.

Keywords: Digital narrative medicine; Disease; Epilepsy; Illness; Personalization of care; Sickness.