Feasibility, acceptability, and efficacy of an adopted novel self-management intervention among people with epilepsy in Uganda.

ABSTRACT

BACKGROUND: Epilepsy is a common neurological condition characterized by poor quality of life and associated stigma. Studies in long-term health conditions suggest that self-management interventions improve the quality of life (QoL) and reduce the perceived stigma among people with epilepsy (PWE). Yet, the utilization of these interventions remains low in sub-Saharan Africa. OBJECTIVES: We investigated the feasibility, acceptability, and preliminary efficacy of an adopted novel self-management intervention, Self-management for people with epilepsy and a history of negative health events (SMART) among PWE in Uganda. DESIGN: A two-year, uncontrolled, prospective pilot study in Ugandans with epilepsy was conducted. PARTICIPANTS: Adults aged ≥ 18 years with epilepsy attending a neurology outpatient clinic were enrolled. INTERVENTION Using a nurse led and peer educator interactions; nine self-management approach sessions (1 individual session and 8 group sessions) were conducted. MAIN OUTCOME MEASURES: The primary outcome was QoL, perceived stigma and depression in PWE at 24-month follow-up using the Quality Of Life In Epilepsy 31 (QOLIE-31) scale and perceived stigma using the Kilifi stigma score and Neurological disorders depression index for epilepsy (NDDI-E). RESULTS: There were 17 individuals and their caregivers who were enrolled into this study with a mean age of 23.47 (SD = 5.3) years. The study intervention was feasible and acceptable within our settings. Overall, quality of life, stigma level, depression, and seizure frequency in the past 30 days were significantly improved from the baseline scores before the intervention with p-values of <0.0001, <0.0001, 0.004, and <0.0001, respectively. SIGNIFICANCE: The SMART intervention engages individuals to actively participate in self-management, and can help reduce depressive symptom severity in PWE. Given the high morbidity and mortality associated with epilepsy, additional research is needed to better identify how SMART might be implemented in routine care settings.