Barriers to biomedical care for people with epilepsy in Uganda: A cross-sectional study

Martin N Kaddumukasa; Mark Kaddumukasa; Mayanja Kajumba; Patrick J Smith; Samuel Bobholz; Angelina Kakooza-Mwesige; Drishti D Sinha; Alysa Almojuela; Payal Chakraborty; Noeline Nakasujja; Juliet Nakku; Alex Gualtieri; Erica Onuoha; Brad J Kolls; Christine Muhumuza; Caleigh E Smith; Nadine Sanchez; Anthony T Fuller; Michael M Haglund; Deborah C Koltai

doi:10.1016/j.yebeh.2020.107349

Barriers to biomedical care for people with epilepsy in Uganda: A cross-sectional study

Epilepsy Behav. 2021 Jan;114(Pt B):107349. doi: 10.1016/j.yebeh.2020.107349. Epub 2020 Sep 20.

Authors

Martin N Kaddumukasa¹, Mark Kaddumukasa², Mayanja Kajumba³, Patrick J Smith⁴, Samuel Bobholz⁵, Angelina Kakooza-Mwesige⁶, Drishti D Sinha⁷, Alysa Almojuela⁸, Payal Chakraborty⁹, Noeline Nakasujja¹⁰, Juliet Nakku¹¹, Alex Gualtieri¹², Erica Onuoha⁷, Brad J Kolls¹³, Christine Muhumuza¹⁴, Caleigh E Smith⁷, Nadine Sanchez⁹, Anthony T Fuller¹⁵, Michael M Haglund¹⁵, Deborah C Koltai¹⁶

Affiliations

¹ Department of Medicine, Mulago National Referral Hospital, Neurology Unit, Kampala, Uganda; School of Medicine, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala, Uganda.
² School of Medicine, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala, Uganda.
³ Department of Mental Health and Community Psychology, Makerere University School of Psychology, P.O. Box 7062, Kampala, Uganda.
⁴ Duke University School of Medicine, Department of Psychiatry and Behavioral Sciences, DUMC Box 3119, Trent Drive, Durham, NC, USA.
⁵ University of Wisconsin - Madison, Department of Neurology, 1685 Highland Avenue, Madison, WI 53705-2281, USA.
⁶ Department of Paediatrics and Child Health, Makerere University College of Health Sciences, Mulago Hill Road, P.O. Box 7072, Kampala, Uganda; Department of Paediatrics and Child Health, Mulago National Referral Hospital, Pediatric Neurology Unit, Kampala, Uganda.
⁷ Duke University Trinity College of Arts & Sciences, Durham, NC 27708, USA.
⁸ Section of Neurosurgery, Rady Faculty of Health Sciences, University of Manitoba, GB1-820 Sherbrook Street, Health Sciences Centre, Winnipeg, MB R3A 1R9, Canada.
⁹ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke Global Health Institute, 310 Trent Dr, Durham, NC 27710, USA.
¹⁰ Department of Psychiatry, School of Medicine, Makerere University College of Health Sciences, P.O. Box 7072, Kampala, Uganda.
¹¹ Butabika National Referral Mental Hospital, P.O. Box 7017, Kampala, Uganda.
¹² Duke University Medical Center, Clinical Neuropsychology Service, Box 3333, Durham, NC, USA.
¹³ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke University School of Medicine, Department of Neurology, Durham, NC, USA; Duke Clinical Research Institute, Neuroscience Medicine, 300 W Morgan St, Durham, NC 27701, USA.
¹⁴ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Makerere University School of Public Health, Department of Epidemiology and Biostatistics, New Mulago Complex, P.O. Box 7072, Kampala, Uganda.
¹⁵ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke Global Health Institute, 310 Trent Dr, Durham, NC 27710, USA; Duke University, School of Medicine, Durham, NC, USA.
¹⁶ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke University School of Medicine, Department of Psychiatry and Behavioral Sciences, DUMC Box 3119, Trent Drive, Durham, NC, USA; Duke University School of Medicine, Department of Neurology, Durham, NC, USA. Electronic address: koltai@duke.edu.

PMID: 32962922
DOI: 10.1016/j.yebeh.2020.107349

Abstract

Objective: Epilepsy, a neurological disorder with effective biomedical treatment, remains largely untreated in Uganda. Potential reasons for this treatment gap (TG) include limited access to trained providers and clinics, social stigmata of seizures, cultural beliefs, or lack of public understanding of epilepsy as a treatable condition. The current study aimed to formally evaluate barriers faced by people with epilepsy (PWE) in Uganda when seeking biomedical care.

Methods: In a cross-sectional study, 435 participants drawn from a community prevalence study were enrolled. We included participants reporting a history of recurrent seizures suggestive of epilepsy, who completed a survey about barriers to obtaining care for their symptoms. Principal axis factor analysis (PFA) using a promax rotation was conducted for data reduction. Frequencies of barrier factors were compared across those who did not seek care for epilepsy (n = 228), those who sought care from biomedical facilities (n = 166), and those who sought care from a traditional or pastoral healer (n = 41).

Results: The PFA yielded a five-factor solution: 1) logistical and actual costs; 2) treatment effectiveness; 3) influence of the opinion of others; 4) doctors' care; and 5) contextual factors impacting decision-making. Variables related to logistical and actual costs were most endorsed. Comparison of groups by care sought did not reveal a difference in endorsement of factors, with the exception that those who sought biomedical care were more likely to endorse factors related to doctors' care compared with those that sought care from traditional or pastoral healers (P = .005).

Conclusions: People with repetitive seizures in Uganda report several barriers to obtaining biomedical care in Uganda, with those related to practical and actual costs endorsed the most. It is imperative that interventions developed to reduce the TG in Uganda consider these practical issues to improve access to effective epilepsy care. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda.

Keywords: Barriers to treatment; Cost; Epilepsy; Uganda.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Cross-Sectional Studies
Epilepsy* / epidemiology
Epilepsy* / therapy
Humans
Surveys and Questionnaires
Uganda / epidemiology