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

D'ALESSIO LUCIANA; SCÉVOLA, LAURA; ODDO, SILVIA; KOCHEN SILVIA; SARUDIANSKY, MERCEDES

Bacelona

Congreso; 32nd International Epilepsy Congress; 2017

International League against epilepsy

Purpose: To identify categories concerning the life impact of illness in patients with drug-resistant epilepsy, taking into account the patient s narratives. Method: A qualitative method using semistructured interviews ?McGillIllness Narrative Interview Schedule- was chosen to gain an in-depth understanding of the perspectives of epilepsy life impact. 32 patients were interviewed. All of them were admitted in the VEEG-Units at two genera lhospitals in Buenos Aires (Argentina). The interviews were transcribed Verbatim. Analysis involved open coding of the data using a process of constant comparison. The data were organized into them es by sorting codes according to relation ships 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 posible to identify idiosyncratic meanings about the disease, which are difficult to achieve through self-administered questionnaires. They give Access to gaining knowledge on how patients understand their illness, and how they feel like living with epilepsy. The domains presented in this work serve as a basis to develop conceptual model about the impact of drug-resistant epilepsy in the patients different life areas -social, cognitive, affective, economic,among others-. They also allow focusing on local features of the disease.Infact, some of the domains relate specifically to characteristics of the context of inquiry -i.e., Health system features-, and cultural variables -i.e., Explanatory models, Social commandments. Taking into account the patients? points of view give place to a better understanding of the patients? experience and the life impact of the disease. It could also be useful to generate more comprehensive forms of patient care in chronic conditions.