By Davidson Ndyabahika & Julius Mugaga Tukacungurwa
A new study conducted in Uganda has unveiled the prevalence of epilepsy and identified significant barriers to treatment. The study conducted by Makerere University School of Public Health in partnership with Ministry of Health and Duke Global Neurosurgery and neurology, utilized community-based screening methods, found that urgent action is needed to increase awareness and allocate more resources to address this pressing public health issue.
Nearly 80% of individuals with epilepsy reside in low- and middle-income countries (LMICs), and a staggering 75% of those with epilepsy in LMICs do not have access to treatment. This alarming trend is further exacerbated by the stigma surrounding epilepsy, which often leads people to avoid seeking medical care due to fear of discrimination or social ostracization. The study underscores the urgent need to address the barriers to treatment, including stigma, and allocate more resources to improve epilepsy care in LMICs.
By providing a community-based descriptive statement about epilepsy in Uganda, this study sought to contribute vital information for intervention planning, addressing the urgent need for increased awareness, support, and access to treatment for people living with epilepsy in Uganda.
At the Epilepsy National Prevalence Study Dissemination and Dialogue meeting held on Wednesday, April 5, 2023 at the Golden Tulip Hotel in Kampala, Professor Anthony Fuller, the USA & Duke Neurosurgery Principal Investigator, revealed concerning findings.
The study unveiled that the national prevalence rate of epilepsy in Uganda is alarmingly high at 1.69 per cent, indicating that over 770,000 Ugandans are living with the disease. Professor Fuller’s presentation shed light on the urgent need for increased awareness, support, and intervention for those affected by epilepsy in Uganda.
During the investigation, participants were asked about their experiences with epilepsy, including symptoms such as shaking, falling, loss of consciousness, bladder control, and abnormal sensations. These questions were part of the primary screen in Phase One of the study, aimed at gathering information on epilepsy-related experiences in the past year.
With a meticulous screening process, the study examined 35,056 individuals suspected to have epilepsy, of whom 2,284 were found positive for unadjusted epilepsy, translating to a prevalence rate of 6.52% in the primary phase.
In the secondary phase, 732 individuals were confirmed positive for unadjusted epilepsy, resulting in a prevalence rate of 2.09%. In this phase, participants were asked about the frequency of attacks, occurrence in children during fever, and association with malaria-related hospitalization. These questions sought to gather additional information to aid in assessing and analyzing the nature and context of participants’ experiences with epilepsy.
Through rigorous clinical validation, including Neuro validation and electroencephalogram (EEG) tests, 594 individuals were confirmed to have epilepsy, bringing the final prevalence rate to 1.69%.
In the Central region, out of 11,746 individuals screened, 198 were confirmed positive for epilepsy, while 11,548 were negative, resulting in a prevalence rate of 1.69%. In the Eastern region, 125 out of 5,776 screened were positive, with a prevalence rate of 2.16%. In the Northern region, 68 out of 5,037 screened were positive, resulting in a prevalence rate of 1.35%. Lastly, in the Western region, 203 out of 12,497 screened were positive, with a prevalence rate of 1.62%.
These regional findings shed light on the distribution of epilepsy cases in Uganda and highlight the need for tailored interventions and support at a local level. “The epilepsy prevalence is unevenly distributed, ranging from zero to over 5% in specific districts,” says study report.
Dr. Fredrick E Makumbi, an Associate Professor and a Ugandan Principal Investigator for the study from MakSPH, highlighted the gap in community awareness regarding epilepsy treatment, leading to an increased prevalence rate.
He pointed out that the youth, aged 18 to 35, had a prevalence rate of 2.37 percent, while those aged 36 to 60 had a prevalence rate of 2.33 percent. Along with other investigators and participants, Professor Makumbi emphasized the need for further studies to identify driving factors and take equitable action.
Dr. Angelina Kakooza Mwesige, a Co-Principal Investigator for Uganda who is also a Senior Lecturer and Paediatric Neurologist in the Department of Paediatrics and Child Health, Makerere University School of Medicine noted interesting gender regional variations of epilepsy with higher prevalence in women compared to men.
In the Eastern region, the prevalence rate was higher in females at 2.40% compared to males at 1.97%. Similarly, in the Central region, the prevalence rate was 1.81% in females and 1.53% in males. In the Northern region, the prevalence rate was 1.33% in females compared to 1.37% in males, while in the Western region, it was 1.54% in females and 1.72% in males.
This revelation according to Dr. Kakooza has prompted further consideration for conducting a specialized study to investigate the underlying factors contributing to this statistic.
“We found the overall prevalence rate is 1.73% in female compared to 1.63% in male. We do not know the reason yet but we are investigating this. Also, what we found out, the medicine that can help treat this disease and the trained specialists are not enough. We need to ensure equal and free access to medicine for all. I appeal to all Ugandans, a person with this disease, just like any other disease deserves our support and care,” said Dr. Kakooza.
Dr. Daniel Kyabayinze, the Director of Public Health at the Ministry of Health -Uganda, thanked the researchers for the great study and acknowledged that epilepsy requires lifelong treatment and highlighted the need to continuously provide treatment for all those affected.
According to Dr. Kyabayinze, the government plans to use the study’s findings to estimate the treatment needs, and Kyabayinze expressed confidence that further examination by Makerere University School of Public Health’s partners will help identify associated factors, such as potential agents or organisms, that can be modified to combat epilepsy. He also noted that while some individuals are already receiving treatment, many Ugandans face challenges in affording the necessary treatment for epilepsy.
Dr. Kyabayinze emphasized the importance of placing mental health specialists in various locations across the country to ensure access to services, stating, “There is also a need to intensify sensitization efforts to avoid stigmatizing people with epilepsy and ensure they receive the services they need.”
Ms. Nina Mago, Founder and Program Advisor of Purple Bench Initiative, underscores the need policy makers to prioritize healthcare needs of individuals with epilepsy to needs of people with epilepsy. She emphasizes affordable access to good quality medication.
“When you have medication, you have less seizures and you become more confident on being independent, to participate in activities which may include going to school, holding up a job, social interaction but all this is possible when there is also strong awareness,” says Nina.
Ms. Mago, says epilepsy is a life-threatening condition; “I came up with a connotation of a phone battery, as a notification of battery low shows up, equally relates to a life about to be lost.”
Dr. Olaro Charles, the Director Health services – Clinical in the Ministry of Health stated that epilepsy remains one of the common mental health conditions in Uganda. He said that they have just concluded a joint review mission and found out that from all their mental health facilities, epilepsy constitute to almost 55.4% of patients.
“If you look at 2019/2020 they were about 314,000 then came to about 340,000 and then last year it was 251,000. This mapping however is very important because it helps us to plan for care. If we do the same in those regions with high prevalence, we may be able to plan well”. Dr. Oralo.
Dr. Sarah Nekesa, Executive Director of Epilepsy Support Association Uganda, called on members of Parliament to increase the budget for mental health drugs, including epilepsy medication, and ensure their availability. She emphasized the need for integrating epilepsy services with other healthcare services to improve accessibility.
Additionally, Dr. Nekesa highlighted the importance of grassroots awareness to combat stigma, and urged the government to allocate adequate human resources and support from health workers to encourage peer talks and build confidence among people living with epilepsy.
“We should increase the drug availability in health facilities and make sure that a person with epilepsy is able to get medication whenever they need it. Epilepsy is not understood by everyone so if everybody understands epilepsy it would be easier for treatment and stigma to go down and integration of epilepsy in every service that is given to the community”. Said Dr. Nekesa.
Mak’s GMI Labs Authorized to Conduct DNA Paternity Testing
The Genomics, Molecular, and Immunology Laboratories (GMI Labs), operating under the auspices of the Makerere University Biomedical Research Center (MakBRC), have achieved another significant milestone in their journey of diagnostic excellence. The labs, renowned for their pivotal role in infectious and non-infectious disease research, have received official approval from the Director General Health Services at the Ministry of Health (MoH), Uganda, to conduct DNA Paternity Tests.
Situated at the Dept of Immunology & Molecular Biology under the School of Biomedical Sciences at the College of Health Sciences, Makerere University, the GMI Labs have been at the forefront of cutting-edge research, diagnostic testing, and training initiatives. Their remarkable contributions during the COVID-19 pandemic, where they conducted nearly a million PCR tests, underscored their unwavering commitment to public health and scientific advancement. The labs’ exemplary performance and reliability were further highlighted by their successful management of two critical COVID-19 prevalence surveys. The findings of these surveys served as foundational data for crucial decisions guiding the country’s lockdown strategies and phased reopening, earning commendation from the President and the Ministry of Health.
This latest authorization from the Ministry of Health marks a significant expansion of the GMI Labs’ diagnostic capabilities. With the approval to conduct DNA Paternity Tests, the labs are now equipped to offer a crucial service addressing the need for accurate and reliable genetic testing for determining biological parentage. In a letter dated 22nd November 2023, the Director General Health Services emphasized the laboratory’s rigorous adherence to international standards, proficiency in molecular biology techniques, and their proven track record in delivering precise and credible results. This approval further solidifies the labs’ position as a trusted institution for advanced genetic diagnostics in Uganda.
Prof. Moses L Joloba, the Director of the GMI Labs, expressed immense pride in the team’s dedication and expertise that led to this authorization. He highlighted the labs’ commitment to upholding the highest standards of ethical practice, confidentiality, and accuracy in DNA paternity testing, ensuring the delivery of dependable results crucial for legal, personal, and familial purposes.
The inclusion of DNA Paternity Testing within the GMI Labs’ list of services aligns with their overarching goal of advancing healthcare through state-of-the-art diagnostics, research, and education. This milestone represents not only a significant achievement for the labs but also a valuable resource for individuals seeking reliable and comprehensive genetic testing services. As the GMI Labs continue their unwavering commitment to excellence in healthcare and research, this new capability reaffirms their pivotal role in advancing the frontiers of molecular diagnostics and genetic testing in Uganda, working closely with reputable institutions such as Makerere University Hospital and other top-notch health facilities.
MNCH e-Post Issue 121: Learning from Nsambya Hospital Human Milk Bank to inform national scale-up & save preterm babies
Welcome to this exclusive interview with Prof. Peter Waiswa, lead expert from the Makerere University Centre of Excellence for Maternal, Newborn, and Child Health. Dr. Victoria Nakibuuka from St. Francis Nsambya Hospital, and Dr. Jesca Nsungwa from Ministry of Health Uganda. In this video, they discuss a groundbreaking innovation in Uganda’s healthcare landscape: the country’s first-ever human milk bank at St. Francis Hospital Nsambya. This initiative represents a significant stride towards improving the survival rates of premature and vulnerable infants by ensuring access to essential breast milk, even when mothers are unable to produce enough. Watch Video
METS Newsletter October 2023
The Monitoring and Evaluation Technical Support (METS) Program is a 5-year CDC-supported collaboration of Makerere University School of Public Health (MakSPH), the University of California San Francisco (UCSF) and Health Information Systems Program (HISP Uganda).
Highlights of the METS October 2023 Newsletter
- Strategies for Enhanced Disease Surveillance and Public Health Response in Uganda
- The MoH Department of Integrated Epidemiology Surveillance & Public Health Emergencies (IES&PHE) Head, Commissioner Allan Muruta (Dr) visited METS to acquaint himself with the various surveillance activities supported by the Program.
- Commissioner Muruta emphasized the need to build the capacity of districts and regions to conduct surveillance activities by training the relevant staff and establishing surveillance focal points at health facility levels.
- He further emphasized the importance of linking laboratory data to the District Health Information System (DHIS2) and ensuring that different systems are interoperable.
- Improving quality of data for HIV testing services (HTS) through regular assessments
- MoH has been conducting Data Quality Assessments and Improvement (DQAI) activities to inform program planning, monitoring, and performance management. HIV testing services (HTS) inter was conducted in 16 regions, 81 districts, and 111 health facilities in partnership with 26 Implementing partners.
- The HTS DQA has improved data management, infrastructure, and understanding of indicators. Specific staff assignment at each HTS entry point has proven effective, and use of the UgandaEMR system for reporting has yielded positive results.
- Shaping Uganda’s Healthcare Data Landscape
- METS has maintained a strong collaboration with the Ministry of Health (MoH) providing invaluable technical support in developing various strategic guidelines for the country. These guidelines include the Uganda Health Information Exchange and Interoperability (HIE) Guidelines, the Uganda Health Data Protection and Confidentiality (HDPC) Guidelines, and the Uganda Health Data Sharing, Access, and Use Guidelines.
- HIE and HDPC guidelines have received the endorsement of the Health Information, Innovation and Research (HIIRE) Technical Working Group (TWG), awaiting presentation to the senior management team at the MoH for final approval.
- Empowering Health Professionals: PrEP Training in Hoima District
- MakSPH-METS has taken a proactive stance in supporting Monitoring and Evaluation (M&E) for key populations through the development, management, and conducting trainings on the use of the PrEP tracker system across various agencies.
- METS conducted a 5-day training on the KP/PrEP Tracker system in Hoima district. Moving forward, facility staff will be able to enter data on PrEP services into the system in a timely manner, analyze the data, and use it for program improvement.
- HIV testing services (HTS) Data Quality Assessments and Improvement DQAIs
- Interagency cervical cancer on-site mentorships
- Orientation in KP tracker-Soroti
- TDY from CDC headquarters visit to METS
- M&E orientation meetings for new Implementing Partners
- Planning meeting for Cross Border Data Sharing-Busia
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