Objective: Because outcome data inform and drive healthcare decisions and improvement of patient care, this study aimed to gain a deep understanding of sociodemographic profiles and treatment outcomes of newly presenting and recently diagnosed persons living with epilepsy (PwE) at a tertiary epilepsy center in Rwanda.
Methods: In June 2016 (T1), as a first stage of this single-center cohort study, an ambispective chart review was conducted on baseline sociodemographic and disease characteristics of PwE using a structured questionnaire. Missing data were obtained by phone interview. In 2017, follow-up data were collected by phone interview on treatment outcomes after 15-months (T2).
Results: Of 406 PwE screened, 235 were included at T1 and outcomes on 166 PwE were obtained at T2. More than 70% were <20 years of age, with a male preponderance. A high number of patients were aged ≥20 years, were single (67.4%), unemployed (41.5%), and had no formal education or primary level education (53.9%), possibly reflecting stigma. A mean delay in diagnosis since first seizure increased with age at first seizure, amounting to 3 years for patients aged ≥20 years. At T2, 69.6% of 166 patients who could be contacted reported no seizures in the previous month. Valproate monotherapy was the most frequently prescribed treatment. At T2, 47% had discontinued treatment, which was often not recommended by a physician, despite medical insurance coverage in >90% of patients. Only 19% reported an adverse event. Marked and partial improvement in quality of life (QoL) was reported by, respectively, 50.9% and 32.7% of patients.
Significance: Encouraging results on improved seizure control and QoL were observed at follow-up. The treatment gap remains high due to loss to follow-up and treatment discontinuation. In this article, we discuss needs and recommendations for improving patient care, requiring concerted efforts of stakeholders at all levels of the healthcare system.
Keywords: Rwanda; demographics; epilepsy care; patients with epilepsy; treatment outcome.