title: Quality of life and burden in caregivers of patients with epilepsy.
abstract: The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodemographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.
authors.affiliation: Department of Neurology, Federal University of São Paulo, São Paulo, Brazil. ana.westphal@terra.com.br
authors.forename: Ana Carolina
authors.initials: AC
authors.lastname: Westphal-Guitti
authors.forename: Neide Barreira
authors.initials: NB
authors.lastname: Alonso
authors.forename: Rosa Cristina Vaz Pedroso
authors.initials: RC
authors.lastname: Migliorini
authors.forename: Tatiana Indelicato
authors.initials: TI
authors.lastname: da Silva
authors.forename: Auro Mauro
authors.initials: AM
authors.lastname: Azevedo
authors.forename: Luís Otávio Sales Ferreira
authors.initials: LO
authors.lastname: Caboclo
authors.forename: Américo Ceiki
authors.initials: AC
authors.lastname: Sakamoto
authors.forename: Elza Márcia Targas
authors.initials: EM
authors.lastname: Yacubian
mesh_terms: D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D001938:Brazil; D017028:Caregivers / Q000523:psychology; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D004833:Epilepsy, Temporal Lobe; D006801:Humans; D020190:Myoclonic Epilepsy, Juvenile; D009679:Nuclear Family; D011788:Quality of Life; D018709:Statistics, Nonparametric