Gaps in management and treatment of epilepsy in people with confirmed or probable neurocysticercosis

Abstract

Epilepsy is a disorder caused by many factors, including infection of the central nervous system with the larval stage of Taenia solium, leading to neurocysticercosis (NCC). People with epilepsy (PWE) in low-income countries often do not receive appropriate treatment, which besides the continuing epileptic seizures, may also lead to cognitive impairment, reduced quality of life, stigma, injuries, and possibly death. The objective of this study was to describe gaps in epilepsy management in a T. solium endemic rural area of Zambia. A cross-sectional study was conducted in Sinda district of the Eastern Province of Zambia between August and October 2018. PWE identified from clinic records including PWE from a previous study were re-contacted. PWE not recorded in the clinic records, but with a reported history of epileptic seizures by community members were also included. Serum and stool samples of PWE were collected and tested for cysticercosis and taeniosis respectively. Two questionnaires were administered, one to PWE and one to local healthcare providers to describe management for epilepsy, the reasons for non-treatment as well as, non-adherence to treatment, and the associated risk factors. A total of 146 PWE and 43 healthcare providers were interviewed. Sixteen of the PWE were diagnosed with definite NCC in a previous study. Samples were tested for 129 PWE out of the 130 who had never been diagnosed with NCC, and thereof 36 were diagnosed with probable NCC following the Del Brutto diagnostic criteria. Forty-four percent of PWE were on anti-epileptic drugs, however, only 26 (17.8%) were on regular anti-epileptic treatment, resulting in a treatment gap of more than 82%. Over 50% of healthcare providers did not know the relationship between epilepsy and NCC. The risk factors associated with lack of correct treatment were stock-outs of anti-epileptic drugs, long distance to health facilities, lack of diagnostic equipment and poor patient follow up, and PWE opting for traditional medicine. The results of this study demonstrated that gaps in the management of epilepsy in PWE and NCC are substantial in Sinda district. The causes are multifactorial, involving shortcomings on the level of the health facilities, communities, and individuals. Significant improvements in the supply and dispensing of anti-epileptic drugs, accompanied by closer monitoring and follow-ups of PWE may be key in substantially reducing the management gap and subsequently address the challenges and suffering of PWE.