The social context and the need of information from patients with epilepsy: evaluating a tertiary referral service

• Published in: Arquivos de neuro-psiquiatria Vol. 73; no. 4; pp. 298 - 303
• Main Authors: Freitas-Lima, Priscila, Monteiro, Edna Almeida, Macedo, Lígia Ribeiro Horta, Funayama, Sandra Souza, Ferreira, Flávia Isaura Santi, Matias Júnior, Ivair, Angelis, Geisa, Nogueira, Adriana Maria Arantes, Alexandre, Veriano, Velasco, Tonicarlo Rodrigues, Pinheiro-Martins, Ana Paula, Sakamoto, Américo Ceiki
• Format: Journal Article
• Language: English
• Published: Brazil Academia Brasileira de Neurologia - ABNEURO 01.04.2015; Academia Brasileira de Neurologia (ABNEURO)
• Subjects: Adult; Anticonvulsants - therapeutic use; avaliação social; Brazil - epidemiology; epilepsia; Epilepsy - epidemiology; Epilepsy - psychology; Female; Health Knowledge, Attitudes, Practice; Humans; informação; Male; Middle Aged; NEUROSCIENCES; PSYCHIATRY; serviço ambulatorial; Social Security; Socioeconomic Factors; Surveys and Questionnaires; Tertiary Care Centers - statistics & numerical data; Unemployment - statistics & numerical data; Brazil; epilepsy; avaliação social; informação; epilepsia; social evaluation; outpatient service; information; serviço ambulatorial
• ISSN: 0004-282X; 1678-4227; 1678-4227; 0004-282X
• DOI: 10.1590/0004-282X20150007

Characterize the social profile and the need of information from patients with refractory epilepsy. A semi-structured questionnaire was applied to 103 patients to investigate sociodemographic aspects, pharmacotherapy and any doubts about epilepsy. Patients were highly dependent on having a free and accessible supply of antiepileptic drugs. Sixty-eight percent of the population was unemployed, and 26% confirmed receiving social security benefits due to epilepsy. Twenty-nine percent of the population reached high school. Eighty-five percent of the patients had at least one doubt about epilepsy; treatment and epilepsy aspects in general were the main topics. As observed in developed countries, patients with refractory epilepsy from a developing country also have high rates of unemployment and low educational levels. The results raise a concern about the need of information about epilepsy by patients and their families, urging the necessity to invest in strategies to solve this deficiency in knowledge.