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A New Study Reveals that Children with Cerebral Palsy have 25 Times Higher Risk Of Premature Death

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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”.

Publication

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:

https://news.ki.se/children-with-cerebral-palsy-in-rural-uganda-have-25-times-higher-risk-of-premature-death

This study was funded by the Swedish Research Council, and Promobilia.

Dr. Angelina Kakooza – Mwesige
Makerere University, College of Health Sciences
Kampala, UGANDA.
On behalf of the Researchers

Computing & IS

MakSPH METS Program HISTAC Positions: Software Developers

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MakSPH-METS Program staff interacting with Mildmay's Elizabeth during the DREAMS Data Audit at Kalule in Nyimbwa Subcounty, Luwero District. Photo credit: MakSPH-METS

The Makerere University School of Public Health (MakSPH)-Monitoring and Evaluation Technical Support (METS) Program is a five-year (2020-2025) CDC funded Cooperative Agreement. The overall purpose of the program is to establish coordinated and effective national and district systems for management of strategic information for a robust HIV Program.

MakSPH-METS is also working as a Sub-Awardee to the University of California San Francisco (UCSF) on a multi country program entitled HQ Support of Improved Interoperable HIS towards HIV/AIDS and TB Control through Improved HIS Policy, Governance, Workforce Capacity and systems under PEPFAR (HISTAC). The program will provide technical assistance in areas of data base management, software development, case-based surveillance, HIS design and implementation.

POSITION SUMMARIES

MakSPH METS is therefore seeking to hire qualified individuals for the following position under
the HISTAC project:

Software Developer (3)

The Software Developer shall be responsible for designing, developing, implementing, maintaining, auditing and improving new and existing health information systems and project software. He/she shall be responsible to customize national health information systems and integrate biometric and other technology for patients tracking, monitoring and referral across service sites.

Qualifications and Experience

A bachelor’s degree in computer science and software engineering and Information systems. A minimum of five years’ experience in software development or working with health information systems.

Soft copies of the applications should be submitted as one PDF file to the following email address mets[at]musph.ac.ug by 5:00 pm on March 3, 2021.

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Health

KI, Mak Enter New Phase of Collaboration with Centre for Sustainable Health

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KI’s President, Ole Petter Ottersen, and the Vice Chancellor Prof. Barnabas Nawangwe signed an agreement to establish the Centre of Excellence for Sustainable Health on 29th January 2021. Photo: Ulf Sirbom, Bildmakarna

By Davidson Ndyabahika. Additional Reporting by Michelle Azorbo

Representatives from Karolinska Institutet and Makerere University on Friday (January 29) signed an agreement, furthering an alliance between the two research-led universities.

The collaboration agreement was establishing the Centre of Excellence for Sustainable Health – CESH. This Centre seeks to promote partnerships, develop capacity, resources and tools to drive the agenda for sustainable health.

Professor Barnabas Nawangwe, Vice Chancellor Makerere University, and Prof. Ole Petter Ottersen, President Karolinska Institutet, signed the agreement in a virtual ceremony.

The agreement is a step in the deepening of the collaboration between the institutions and a major leap towards driving the agenda for sustainable health.

“Fueled by our experiences in COVID-19, we see an urgent need to build universal preparedness for health and I am convinced that the new Centre will contribute significantly to this. My vision is that the Centre of Excellence for Sustainable Health will help transform how research and policies are formulated and conducted in the area of sustainable health”, explained KI’s President Ole Petter Ottersen.

Professor Nawangwe said that the signing ceremony marks a milestone of deepening the successful cooperation between Makerere University and Karolinska Institutet

“This is an important next step in the long-standing collaboration between Makerere University and Karolinska Institutet. Deepening our partnership will be a significant contribution to increase action to achieve the Sustainable Development Goals of the United Nations’ 2030 Agenda”, said Professor Nawangwe.

In a dialogue preceding the signing session, the two heads of KI and Mak shared warm experiences and visions for the partnership. They also congratulated each other on the roles the institutions are doing to support efforts to curb the global pandemic.

Professor Nawangwe highlighted the pivotal role Makerere University as a key research institution in Uganda is doing to support national and global efforts in the fight against the coronavirus pandemic.

He says while the pandemic has brought problems, it has shown some realities of what the world is.

“The effects of the pandemic on the African continent have been a blessing in disguise. It has been what I could call ‘a rude awakening of Africa’ because Africa was for the first time completely isolated in many ways. That forced us to begin thinking what do we do? We must find solutions to our problems including health problems. And that is why you see a lot of efforts by our researchers to find solutions for COVID-19,” Professor Nawangwe.

KI’s President Ole Petter Ottersen said many projects that have been set up in the name of global health have largely been short term and sort of ‘hit and run projects’.

He contends that there is a need to put into context collaboration the elements of long-term perspective and with ambitions to end up in policy changes and implementation of new knowledge in order to have a permanent change for the better when it comes to health policies.

According to Ottersen, this global pandemic has put the world at crossroads that requires more attention to be paid to the global challenges whose targets were set for 2030. He also highlighted the need to use this pandemic as an opportunity to bolster efforts to the goals of agenda 2030.

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Health

Address Drivers of Non-compliance to COVID-19 Guidelines, Researchers Urge Government

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L-R: Dr. Misaki Wayengera-MoH-National COVID Taskforce, Dr. Gloria Seruwagi-REFLECT Study PI and Mr. Thomas Mugweri-Kyegegwa District COVID Taskforce engage the community on Britop Radio 94.1 FM in December 2020.

Makerere University researchers and local leaders have asked government and other key stakeholders in refugee management to address community drivers of non-compliance to COVID-19 guidelines as increased cases continue to be registered across the country.

This call was made at the dissemination event of a study conducted by Makerere University titled Refugee Lived Experiences, Compliance and Thinking (REFLECT) in COVID-19. The REFLECT dissemination was undertaken at multiple sites in Kisenyi (Kampala), Kyaka II Refugee Settlement (Kyegegwa) and Adjumani (West Nile) on 14th December 2020.

The REFLECT study observed that compliance levels around COVID-19 guidelines drastically declined between May-August 2020 and continue going down despite increased infections from community transmission. The stakeholders at this event cautioned that addressing the drivers of non-compliance was necessary in light of the overwhelmed health system, currently ongoing political campaigns and massive social gatherings in the Christmas season and beyond.

Since March 2020 the Uganda government and its partners have conducted a fairly successful awareness campaign on the prevention of COVID-19. However, this knowledge has not translated into sustainable behavioural change and while there was strict observance of COVID-19 at the start of the pandemic, compliance has drastically dropped due to a number of reasons. This is why all prevention efforts should now focus on addressing the barriers to non-compliance as the country enters into the second wave and peak period of COVID-19 transmissions.

A study conducted from among 2,092 people in refugee settlements in Uganda has found a serious disconnect between the high knowledge levels and levels of compliance with the recommended COVID-19 preventive measures. A total of 13 settlements were considered for this study including Kisenyi in Kampala, Kyaka II in Kyegegwa district and 11 settlements in Adjumani district, West Nile.

Presenting findings of the study at Kyaka II Refugee Settlement in Kyegegwa, South-Western Uganda, the research team led by Dr Gloria Seruwagi observed that compliance levels had declined over time (between March/April and July/August); unfortunately coinciding with increasing number of COVID-19 cases and deaths.

Inappropriate use of masks was found prevalent in some of the study sites – including sharing of masks, and only wearing them when the refugees meet the Police. Researchers say these practices constitute a source of risk for infection, rather than being protective.

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