Epilepsy in Uganda: Clinical characterization and co-morbidities, their relation to stigma among adolescents and impact of a community-based engagement program (AWE Change project) - Abstract/Project Summary: Epilepsy is one of the oldest, common, neurological disorders known to mankind, contributing approximately 0.5% to the total global burden of disease. The majority of affected individuals (>80%) live in low resource settings such as is found in Uganda, with the poor most at risk in view of their high exposure to other co-existing conditions associated with epilepsy, as well as limitations in accessing appropriate care. Only an estimated 1 in 5 PWE in sub Saharan Africa (SSA) are able to access the appropriate treatment of epilepsy with anti-seizure medications. The combination of challenges in accessing appropriate care, with practically universal discrimination and stigma associated with epilepsy, has led to subsequently high levels of preventable disability, social exclusion, and negative mental health outcomes in people with epilepsy (PWE). Almost a half of PWE are burdened with other coexisting medical conditions that worsen their quality of life, impact on the mental, physical, social and emotional development and general wellbeing. Therefore, achievement of Universal Health Coverage and the Sustainable Development Goals will be elusive without concerted efforts to prioritize epilepsy in national public health agendas through sustained and coordinated action. The long-term aim of the proposed international collaborative effort is to reduce the public health burden and the impact of epilepsy stigma in Uganda so as to yield innovative, transferable knowledge and care gains. Our preliminary work has engaged a randomly selected national community cohort, 732 of which are probable PWE. In our initial aim we will utilize a cross sectional comparable design to clinically characterize this sample and matched controls to inform our understanding of the manifestation and impact of epilepsy across the lifespan in Uganda. Characterization will include: ILAE classification epilepsy subtype, seizure frequency and severity, and illness duration. Environmental (birth injuries, malnutrition) and genetic risk factors will be explored. Comorbidities will include primarily psychiatric and psychosocial outcomes (depression, suicidality, anxiety, Quality of life (QOL), and perceived stigma) but will also include key health comorbidities (burns, developmental disorders, and neurocognitive deficits). Finally, academic progress and occupational engagement will be ascertained. In the second aim, using a mixed-methods approach we will define the impact of stigma on the highly vulnerable adolescent with epilepsy (AWE) population, and also expose the key drivers of stigma in the community. Further clarification will be made to explain how community misconceptions about epilepsy interact with specific patient characteristics and impacts to increase risk for or mitigate stigma, which in turn impact QOL outcomes. Finally, employing an innovative blend of scientific and change management principles we will engage a targeted community of AWE and their caregivers to co-create, pilot, refine, and test unique stigma reduction programs. Through various meetings with relevant national and community stakeholders we will identify community values, resources, and networks. Through sharing of information and perspectives, proposed stigma reduction programs which resonate with the priorities and culture of the community will be generated. After vetting to select the most promising use of resources, programs will be piloted, refined, and formally implemented and evaluated.
