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. 2019 Feb 21;4(1):123-132.
doi: 10.1002/epi4.12304. eCollection 2019 Mar.

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

Frank Van Steenkiste  1 , Sebera Fidèle  2 , Wellars Nsanzabaganwa  2 , Beni Uwacu  2 , Peter Dedeken  3 , Dirk E Teuwen  4 , Paul Boon  1
Affiliations

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

Frank Van Steenkiste et al. Epilepsia Open. .

Abstract

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.

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Conflict of interest statement

Frank Van Steenkiste received travel funding from UCB Biopharma. Beni Uwacu and Fidèle Sebera have received research grants from UCB. Peter Dedeken is a consultant for UCB Biopharma. Dirk Teuwen is an employee of UCB Biopharma. Paul Boon and his institution have received support from UCB Pharma in the form of research grants and speaker and consultancy fees. The remaining author reports no conflicts of interest relating to this study. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Figures

Figure 1
Figure 1
Change in seizure frequency after 15 months (T2) of treatment compared to baseline T1
Figure 2
Figure 2
Change in seizure frequency after 15 months of treatment among patients who had continued or discontinued therapy
See this image and copyright information in PMC

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