Qualidade de vida do cuidador e da criança com epilepsia fármaco-resistente em tratamento com dieta cetogênica

Abstract

ABSTRACT Objective To assess caregivers’ burden and quality of life of children and adolescents with drug-resistant epilepsy treated with ketogenic therapy. Methods Survey-type study involving caregivers of children and adolescents being monitored at the ketogenic diet clinic of the Instituto de Medicina Integral Prof. Fernando Figueira. Socioeconomic data were collected from the patients’ medical records. Telephone interviews with the guardians of the child/adolescent were carried out using two instruments: 1) The Quality of Life of Children with Epilepsy, which approaches the physical, psychological, cognitive/educational and socio-familial domains from the parents perspective,; and 2) The Zarit Burden Inventory, which assesses the impact of chronic mental disorders on the physical and emotional well-being, social life and financial aspects of the caregiver. Results The sample consisted of 49 children and adolescents of caregivers with a median age of 44 years, 61;2% of whom were male. The results obtained using the Quality of Life of Children with Epilepsy showed that after the cognitive/educational domain, the domain most impaired was the physical domain (median=52.8, Q1=47.2; Q3=61.1) and the most preserved was the psychological domain (median=77.8; Q1=70.8; Q3=83.3). The burden was considered moderate to severe for the majority (55.1%) of caregivers. Conclusion A poor quality of life for the child/adolescent and an increase in the caregiver’s burden were observed, interfering in the daily life and personal relationships of the guardians. Thus, the multidisciplinary team should also offer support and appropriate technical support to caregivers.