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.
