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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

Health

UniCare App: 24/7 Access to Counselling

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UniCare App: 24/7 Access to Professional Counselling Services. Available on Google Play Store.

The Counselling and Guidance Centre (CGC) has developed UniCare, a counselling App for the Makerere University community members (Staff and Students).

Do you have personal concerns that need addressing?

Do you need to improve your life skills?

Are you struggling with something and need to talk to someone professional in confidence?

Then download UniCare from the Play Store and use it at any time of your convenience.

You can access counselling services through instant messaging, phone calls and other forms.

Enquiries:

Tel: +256-751-700897
Email: rbaguma[at]cit.ac.ug, henry.nsubuga[at]mak.ac.ug

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Call for Applications: PhD Fellowships in Bioethics (4th Cohort)

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The Davies Lecture Theatre (Right), School of Biomedical Sciences (Blue) and other buildings at the College of Health Sciences (CHS), Mulago Campus, Makerere University, Kampala Uganda

Applications are invited for PhD fellowships in bioethics from Makerere University College of Health Sciences (CHS) faculty and individuals who participate in the academic activities of the college who are interested and COMMITTED to becoming bioethics scholars.

Successful applicants should be willing to become bioethics scholars as they work within the structured and mentored training programme with a focus on any aspect of international research bioethics related to Health Sciences. Funding will be available to support 2 successful doctoral candidates up to 3 years of accelerated training leading to the award of the Makerere University doctoral degree.

Eligibility

This training is open to faculty including people who contribute to teaching and research at Makerere University or one of its partner institutions in Uganda, who meet any of the following criteria:

a. Able to articulate a clear research bioethics problem of interest to them.
b. Demonstrate prior participation in bioethics, beyond having submitted research proposals to an IRB.
c. Demonstrate a basic understanding of bioethics in order to know that this is an appropriate next step for the applicant.
d. Demonstrate past active participation in bioethics in health service delivery or at the interface of health related ethical-legal issues
e. Provide evidence of experience in research in bioethics and or authorship in this field
f. Prior master’s level or fellowship level training in bioethics or related fields.

Criteria for Selection

  1. Demonstrated interest in doctoral research training and conducting research with a focus on
    research bioethics.
  2. Potential to handle rigorous academic requirements of the doctoral program.
  3. Having a plan for career development
  4. Capacity towards attaining research leadership and international recognition in bioethics.
  5. Female candidates and medical doctors are especially encouraged to apply

Application Process

Applications must be submitted to makbioethics[at]gmail.com and should consist of a cover letter (1 page only), a resume (not more than 3 pages), a personal statement (Maximum 1 page), a Makerere University formatted PhD research concept (Maximum 10 pages) and two letters of recommendation (sent separately by the referees to makbioethics[at]gmail.com). The personal statement should include your contribution to the academic and research life of a department at Makerere University College of Health Sciences, your aspirations for career progression in the next 5-7 years, research interests and any information you consider relevant.

Closing date for the receipt of applications is 8th October 2021.

Enquiries can be forwarded to the PI, of the PhD bioethics research training Program on makbioethics[at]gmail.com

Timelines:

  • Application deadline: October 8, 2021
  • Interviews: October 15, 2021
  • Notification date: October 22, 2021
  • Proposed start date: November 1, 2021

Part of this training will take place at Johns Hopkins University Berman Institute of Bioethics in the USA in Year 1 for a total of 2-3 months. Successful candidates will receive a monthly stipend based on USA National Institutes of Health regulations, tuition, research funds and travel to the USA. Applicants should demonstrate excellent communications skills and will be expected to work as part of a highly motivated, result oriented bioethics group.

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IDI Supports Wakiso’s Point of Care Electronic Medical Records

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Representatives from IDI, Mildmay Uganda and Wakiso District Leadership that took part in the handover of equipment to support EMR-POC on 13th September 2021.

The Makerere University Infectious Diseases Institute (IDI) Kampala Region HIV Project handed over equipment worth UGX 460,000,000 to the Wakiso District Leadership to support Point of Care Electronic Medical Records (EMR-POC). This was made possible with support from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) through the
Centers for Disease Control and Prevention (CDC).

The equipment includes Computers, furniture, biometric scanners and networking equipment for a wireless mesh. In attendance was the Wakiso District Leadership led by the Principal assistant secretary, Ms. Babirye Olivia, as well as representatives from IDI and Mildmay Uganda.

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