An ambispective cohort study on treatment outcomes of patients with epilepsy in a tertiary epilepsy center in Rwanda and recommendations for improved epilepsy care

Abstract

Summary 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.

High prevalence of epilepsy in Northern Rwanda: Exploring gender differences

“…The frequency of cerebral malaria in our cohort of PwE was higher than the reported malaria prevalence of 1% in the There is a clear association between epilepsy and HIV with newonset seizures occurring in up to 11% of HIV infected persons (Howlett, 2019). The observed 4.6% of a HIV positive status was somewhat higher than the percentage of 1.7% observed in a Rwandan tertiary epilepsy center, and higher than the 2.6% of HIV positive PwE in the province (Nsanzimana et al, 2017;Van Steenkiste et al, 2019). It is noteworthy that no case of neurocysticercosis was reported, possibly due to low number of imaging studies and unavailability of diagnostic serological tests.…”

Effectiveness of Involvement of Community Health Workers in Identification and Referral of Persons Living With Epilepsy in Rural Rwanda

“…The diagnosis gap in screened and clinically evaluated patients was 47.0% considering 312 out of 589 persons were previously diagnosed with epilepsy. The treatment gap amongst those previously diagnosed with epilepsy was 84.6% considering only 48 persons out of 312 have access to regular AED treatment, in line with previous ndings in Rwanda [6,18].…”

Effectiveness of community health workers on identification and mobilization of persons living with epilepsy in rural Rwanda using a validated screening tool

“…In contrast to these long-term programs, we opted for a one-off, short-term coordinated action with a single day training and a short screening period, quickly followed by referral for confirmation of diagnosis. We confirmed our hypothesis of an existing treatment gap as previously documented in Rwanda [3,25]. A total 541 PwE was referred for epilepsy follow-up and treatment, which is a decrease of more than 15% of the initially assumed diagnosis gap, which still remains large [4].…”