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National Epilepsy Prevalence in Uganda: a First Glimpse by Sarah Jo Snouse Duke Global Health Institute Duke University Date

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National Epilepsy Prevalence in Uganda: a First Glimpse by Sarah Jo Snouse Duke Global Health Institute Duke University Date National Epilepsy Prevalence in Uganda: A First Glimpse by Sarah Jo Snouse Duke Global Health Institute Duke University Date:_______________________ Approved: ___________________________ Michael Haglund, Advisor ___________________________ Anthony Fuller ___________________________ Amy Herring Thesis submitted in partial fulfillment of the requirements for the degree of Master of Science in the Duke Global Health Institute in the Graduate School of Duke University 2020 ABSTRACT National Epilepsy Prevalence in Uganda: A First Glimpse by Sarah Jo Snouse Duke Global Health Institute Duke University Date:_______________________ Approved: ___________________________ Michael Haglund, Advisor ___________________________ Anthony Fuller ___________________________ Amy Herring An abstract of a thesis submitted in partial fulfillment of the requirements for the degree of Master of Science in the Duke Global Health Institute in the Graduate School of Duke University 2020 Copyright by Sarah Jo Snouse 2020 Abstract Background: In sub-Saharan Africa, epilepsy is ranked 14th for the highest disability burden. In Uganda, specifically, epilepsy has risen from 14th in 2007 to 10th for the highest burden of disability in 2017. Despite the significant disease burden of epilepsy in Uganda, there have been no national prevalence studies. Our first aim is to understand the overall epilepsy prevalence in Uganda. Additionally, we want to understand the impact that demographic and socio-economic factors have on epilepsy prevalence and whether these factors varied in their impact geographically. Methods: Three hundred and thirty EAs were selected for this study, stratifications included urban/rural and the 10 sub-regions delineated in the DHS. In each EA, we randomly selected 30 households out of 100 (on average). All members of the household that consented, or assented, to be part of the study were included. We used a 13-item survey, broken into two levels, to screen for epilepsy and collected a variety of demographic and socio-economic factors from each participant. These factors were mapped to determine the impact, and significance, that each factor had on the geographic distribution of epilepsy prevalence in Uganda. Results: The groups who had the highest epilepsy prevalence were under 35 years of age, had less than a primary level of education, lived in rural areas, had less than five household members, had access to a mobile phone and had less than two combined assets. The vast majority of positive screened participants were Christian and made less than 20,000 UGX a week. iv Conclusions: From this study, we can see areas within Uganda where some geographic, demographic, and socio-economic factors have possibly played a role in epilepsy prevalence, as defined by our first screen. We can begin to understand these patterns and explore them further to determine the true nature of these factors and their relationship with epilepsy. There are current policy changes that could greatly improve access to care, stigma, and prevent further epilepsy cases by improving infrastructure in key areas. v Dedication I would like to dedicate this work to my family and fiancé. Without your support, love, encouragement, and guidance none of this would have been possible. I would also like to thank God for unwavering guidance, love, and direction. vi Contents Abstract .............................................................................................................................. iv List of Tables ..................................................................................................................... ix List of Figures ..................................................................................................................... x Acknowledgments.............................................................................................................. xi 1. Introduction ..................................................................................................................... 1 1.1 Background ............................................................................................................. 1 1.2 Epilepsy Prevalence on the Global Scale................................................................ 2 1.3 Epilepsy Prevalence in Sub-Saharan Africa ........................................................... 4 1.4 Ugandan Study Context .......................................................................................... 7 1.5 Study Aims.............................................................................................................. 9 2. Methods......................................................................................................................... 11 2.1 Study Introduction ................................................................................................ 11 2.2 Participants ............................................................................................................ 12 2.3 Procedures ............................................................................................................. 12 2.4 Measures ............................................................................................................... 14 2.5 Analysis................................................................................................................. 18 3. Results ........................................................................................................................... 21 3.1 Introductory Findings............................................................................................ 21 3.2 Epilepsy Prevalence - Study Aim 1 Results ......................................................... 22 3.3 Demographic and Socioeconomic Factors - Study Aim 2 Results ....................... 23 3.4 Analysis of Aim 2 - Regional Level ..................................................................... 25 3.4.1 Demographic Findings ..................................................................................... 25 vii 3.4.2 Socio-Economic Findings ................................................................................ 27 3.5 Analysis of Aim 2 - District Level ........................................................................ 29 4. Discussion ..................................................................................................................... 38 4.1 Discussion of General and Regional Findings ...................................................... 38 4.2 Discussion of District Findings ............................................................................. 41 4.3 Implications for policy and practice ..................................................................... 45 4.4 Implications for further research ........................................................................... 46 4.5 Study strengths and limitations ............................................................................. 47 5. Conclusion .................................................................................................................... 48 6. References ..................................................................................................................... 49 viii List of Tables Table 1: Study Overview.……………………………………………………………… 23 Table 2: Epilepsy Prevalence: Regional Analysis.……………………………………... 24 Table 3: Demographic Factors…………………...……………………………………... 25 Table 4: Socioeconomic Factors………………………………………………………. 26 ix List of Figures Figure 1: First Screen.…………………...……………………….….………………… 15 Figure 2: Second Screen…...………………………...……………..………………….. 16 Figure 3: Epilepsy Prevalence………………...…………………………….…………. 20 Figure 4: Epilepsy Prevalence Across Gender……...………………………….……… 26 Figure 5: Epilepsy Prevalence Across Age Categories…………...…………………… 27 Figure 6: Epilepsy Prevalence Across Education Categories………………………..... 28 Figure 7: Epilepsy Prevalence Across Geographic Location……………………….…. 29 Figure 8: Epilepsy Prevalence Across Household Size. …………………………..…. 30 Figure 9: Epilepsy Prevalence using Well/Sick Analysis. ……………………....…… 31 Figure 10: Epilepsy Prevalence Across Assets…………………………………..……. 32 Figure 11: Epilepsy Prevalence Across Combined Assets...……………...…………… 33 Figure 12: Epilepsy Prevalence and Religion……………..…………………………... 33 Figure 13: Epilepsy Prevalence and Income. …………..………………...………….... 34 x Acknowledgments I would like to thank the members of my thesis committee; your countless hours of assistance, willingness to teach, and the knowledge that you imparted upon me has been invaluable for both the development of this thesis and to myself as a student. I would also like to thank the faculty and staff within DGNN, DGHI, and my peers for their support and willingness to pass on their skills and knowledge. I would like to thank the Ugandan DGNN team, without their dedication and hard work, this project would not have been possible. I would also like to thank my friends, parents, brother, fiancé and extended family for their love and support through this process. Lastly, and most importantly, I would like to thank the participants of this study. It is my hope that through this project we can work to improve the lives of those living with epilepsy throughout Uganda. xi 1. Introduction 1.1 Background Epilepsy affects nearly 50 million people worldwide with nearly 80 percent residing in LMICs (low- and middle- income countries) (Epilepsy, n.d.). Epilepsy is categorized as a chronic NCD (non-communicable disease) characterized
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