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Excessive premature mortality among children with cerebral palsy in rural Uganda: a longitudinal, population-based study

https://doi.org/10.5878/xr97-2a37
Background Studies from high-income countries reported reduced life expectancy in children with cerebral palsy (CP), while no population-based study has evaluated mortality of children with CP in sub-Saharan Africa. This study aimed to estimate the mortality rate (MR) of children with CP in a rural region of Uganda and identify risk factors and causes of death (CODs). Methods and Findings This population-based, longitudinal cohort study was based on data from Iganga-Mayuge Health and Demographic Surveillance System in eastern Uganda. We identified 97 children (aged 2–17 years) with CP in 2015, whom we followed to 2019. They were compared with an age-matched cohort from the general population (n=41 319). MRs, MR ratios (MRRs), hazard ratios (HRs), and immediate CODs were determined. MR was 3952 per 100 000 person years (95% CI 2212–6519) in children with CP and 137 per 100 000 person years (95% CI 117–159) in the general population. Standardized MRR was 25·3 in the CP cohort, compared with the general population. In children with CP, risk of death was higher in those with severe gross motor impairments than in those with milder impairments (HR 6·8; p=0·007) and in those with severe malnutrition than in those less malnourished (HR=3·7; p=0·052). MR was higher in females in the CP cohort, with a higher MRR in females (53·0; 95% CI 26·4–106·3) than in males (16·3; 95% CI 7·2–37·2). Age had no significant effect on MR in the CP cohort, but MRR was higher at 10–18 years (39·6; 95% CI 14·2–110·0) than at 2–6 years (21·0; 95% CI 10·2–43·2). Anaemia, malaria, and other infections were the most common CODs in the CP cohort. Conclusions Risk of premature death was excessively high in children with CP in rural sub-Saharan Africa, especially in those with severe motor impairments or malnutrition. While global childhood mortality has significantly decreased during recent decades, this observed excessive mortality is a hidden humanitarian demand that needs to be addressed. The dataset contains of the following files: - CP_cohort–Children_and_youth_at_the_IM-HDSS.csv - CoD–General_population_of_children_and_youth_IM-HDSS.csv - Variable_list.pdf Details about the variables in the tables can be found in the variable list.
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Citation and access

Data access level:

Creator/​Principal investigator(s):

Research principal:

Data contains personal data:

Yes

Code key exists:

Yes

Citation:

Language:

Method and outcome

Unit of analysis:

Population:

Children and youth with cerebral palsy

Study design:

  • Observational study

Description of study design:

Longitudinal cohort study

Sampling procedure:

Description of sampling:

Three stage screening survey

Time period(s) investigated:

Variables:

21

Number of individuals/​objects:

97

Response rate/​participation rate:

100%

Data format/​data structure:

Data collection Observation

Mode of collection:

Observation

Time period(s) for data collection:

2015-03-01 - 2019-12-15

Data collector:

  • Makerere University

Source of the data:

  • Research data
  • Population group

Geographic coverage

Geographic location:

Geographic description:

Iganga, Uganda

Lowest geographic unit:

Municipality

Highest geographic unit:

Region

Administrative information

Responsible department/​unit:

Department of Women's and Children's Health [K6]

Contributor(s):

Ethical Review

Reviewer:

  • Other

Registration number:

HS 2608 - Uganda National Council for Science and Technology

Funding

Funding agency:

  • Foundation Frimurare Barnhuset

Funding agency:

Award number:

2017-05474_VR

Award title:

Developmental disabilities in Uganda: Early detection and intervention

Funding information:

Developmental delay and disability (DDD) affect more than 100 million children worldwide; the majority living in low income settings and often failing to receive even basic education or health care. Recent findings in developmental neuroscience highlight the importance of an enriched, supportive and healthy environment in the first years of life for achieving one’s developmental potential; with children with DDD at high risk for poor outcomes. This project aims to make these children “visible” and to examine the extent to which they are excluded from participation in family and community activities, and to implement and evaluate intervention strategies addressing their unmet health and developmental needs. We will expand our collaborative studies with a Health and Demographic Surveillance System in Uganda by first exploring the epidemiology of all types of DDD in children ages 1-9 years using a three-stage screening process. Next, we will train a team of community and health workers for a controlled early intervention study on these children in collaboration with UNICEF. In addition, we will perform a 3-year longitudinal follow up of our previously identified cohort of children with cerebral palsy and design, execute and evaluate goal directed interventions. Critical knowledge gaps in global outcomes for children with DDD will be addressed through this project and successful interventions will be scaled up and disseminated to other nations by the UNICEF collaboration.

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Publications

Citation:

Namaganda LH, Almeida R, Kajungu D, Wabwire-Mangen F, Peterson S, Andrews C, Eliasson AC, Kakooza-Mwesige A, Forssberg H. Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study. PLoS One. 2020 Dec 29;15(12):e0243948. doi: 10.1371/journal.pone.0243948.

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