From the patients' perspective: life impact of illness in drug-resistant epilepsy patients from Buenos Aires, Argentina

SARUDIANSKY, M, SCÉVOLA, L, ODDO, S, KOCHEN, S, D' ALESSIO

Congreso; 32 ND INTERNACIONAL EPILEPSY CONGRESS; 2017

Purpose: To identify categories concerning the life impact of illness inpatients with drug-resistant epilepsy, taking into account the patient?snarratives.Method: A qualitative method using semistructured interviews -McGillIllness Narrative Interview Schedule- was chosen to gain an in-depthunderstanding of the perspectives of epilepsy life impact. 32 patientswere interviewed. All of them were admitted in the VEEG-Units at twogeneral hospitals in Buenos Aires (Argentina). The interviews were transcribedVerbatim. Analysis involved open coding of the data using a processof constant comparison. The data were organized into themes bysorting codes according to relationships between them.Results: Several domains emerged from the data: Social commandment,affective reactions, autonomy, prejudice, limitations, epilepsy meanings,explanatory models, seizure unpredictability, doctor-patient communication,among others. These categories were organized into 6 broad themes:Self-perception; External perception; Performance; Illness attributions;Illness characteristics; Healh-system features.Conclusion: Qualitative methods make it possible to identify idiosyncraticmeanings about the disease, which are difficult to achieve throughself-administered questionnaires. They give access to gaining knowledgeon how patients understand their illness, and how they feel like livingwith epilepsy. The domains presented in this work serve as a basis todevelop conceptual models about the impact of drug-resistant epilepsy inthe patients? different life areas -social, cognitive, affective, economic,among others-. They also allow focusing on local features of the disease.In fact, some of the domains relate specifically to characteristics of thecontext of inquiry -i.e., Health system features-, and cultural variables -i.e., Explanatory models, Social commandments. Taking into account thepatients? points of view give place to a better understanding of thepatients? experience and the life impact of the disease. It could also beuseful to generate more comprehensive forms of patient care in chroniccondition