The largest study on Cerebral palsy in Africa to date reveals that interventions to prevent malaria infections such as the use of insecticide-treated mosquito nets, coupled with caregiver training and support, including best feeding practices and simple measures to prevent other infections, could potentially reduce mortality in children with Cerebral palsy in this region. The study found out that the main causes of death were malaria and aneamia. The children with severe malnutrition and severe motor impairments were the most likely to die.
Cerebral palsy (CP) is a developmental disorder and the most common cause of childhood physical disability globally. CP is significantly more prevalent in low-income and middle-income countries like Uganda where the researchers noted a lower prevalence in the older (8-17 years) than younger (2-7 years) age groups as demonstrated in the findings of an earlier study conducted in 2015. https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(17)30374-1/fulltext
The decline in prevalence of children with CP with increasing age in the 2015 study, led the researchers to hypothesize about the risk of premature death in these children.
In order to get a better understanding of the situation, a follow-up study was carried out at the Iganga-Mayuge Health and Demographic Surveillance Site (IM-HDSS) in eastern Uganda. Earlier in 2015, the researchers had screened 31,756 children and identified 97 (aged 2–17 years) who were diagnosed as having CP. The children with CP were followed up to 2019 and compared with an age-matched sample of the IM-HDSS general non-CP population (n=41, 319). The rates and causes of deaths in these groups were determined.
The research team found that the rate of death was 25 times higher in the CP group than the general non-CP population sample. The mean age at death among the CP group was 10•2±5•9 years and 7•2±4•8 years among the general non-CP population sample. In the CP group, females and older children (10-18 years) had higher relative risks of death in relation to the non-CP general population. Significantly, in children with CP, there was an almost 7 times risk of death in those with severe motor impairments compared to those with milder ones. In addition, those with severe malnutrition had a more than 3 times higher risk of death than children without severe malnutrition. The causes of death were from common conditions like anemia, malaria and common infections.
The results of this study, are the first of its kind to reveal the true extent of the hidden humanitarian crisis of excessive mortality in the CP child population. Severe malnutrition as one of the risk factors of excessive mortality plays a dynamic multifaceted role, partly aggravated by severe oral motor impairments which lead to chewing and swallowing problems, and the need for special foods and prolonged feeding times. Furthermore, the age pattern for mortality in children with CP confirms this study’s hypothesis with many dying when approaching school age, compared to the non-CP general population. The probable reasons for this may be attributed to caregivers eventually losing hope as these children grow older when they realize that their child will not be cured, or alternatively as a result of the minimal time provided to the child with increasing age (including during supervised feedings), which increases their vulnerability.
The higher mortality among the females may suggest a preferential treatment of boys with CP in Uganda which needs further study. Finally, regarding the causes of death, the frequent occurrence of anemia as a cause of death may signify the interplay of the conditions of underlying malaria infections and severe malnutrition in severely impaired children with feeding problems.
A multipronged approach including raising awareness about this challenge should be emphasized locally and internationally to promote the development of appropriate health and advocacy policies. Although efforts to reduce child mortality are quite evident in the recent decades, targeted interventions to reduce mortality in the CP child population, such as the use of insecticide-treated mosquito nets to prevent malaria infections, provision of easy to use, locally available nutritious foods coupled with caregiver information and support should be encouraged. Reinforcement and regular review of the existing laws and policies related to their specific requirements should be enacted. In general, further research to identify long-term risk factors and immediate causes of death in children with developmental disabilities in the region is also urgently required
These findings are to be formally published in the journal ‘PLOS ONE’ and entitled: “Excessive premature mortality among children with cerebral palsy in rural Uganda: a longitudinal, population-based study”.
Namaganda LH, Almeida R, Kajungu D, Wabwire-Mangen F, Peterson S, Andrews C, et al
PLoS One 2020 ;15(12):e0243948
Related story by collaborators at Karolinska institute here:
Dr. Angelina Kakooza – Mwesige
Makerere University, College of Health Sciences
On behalf of the Researchers
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
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