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

SND-ID: 2020-178

Description Data and documentation

Creator/Principal investigator(s)

Hans Forssberg - Karolinska Institutet, Department for Women's and Children's Health orcid

Angelina Kakooza-Mwesige - Makerere University, Department of Pediatrics and Child Health orcid

Description

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 im

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Language

English

Research principal, contributors, and funding

Research principal

Karolinska Institutet

Contributor(s)

Lukia Namaganda - Makerere University, School of Public Health orcid

Funding 1

  • Funding agency: Swedish Research Council
  • Funding agency�s reference number: VR 2017-05474

Funding 2

  • Funding agency: Foundation Frimurare Barnhuset
Protection and ethical review

Data contains personal data

Yes

Ethics Review

Other - Ref. HS 2608 - Uganda National Council for Science and Technology

Method

Unit of analysis

Population

Children and youth with cerebral palsy

Study design

Observational study

Description of study design

Longitudinal cohort study

Sampling procedure

Total universe/Complete enumeration
Three stage screening survey

Time period(s) investigated

2015-03-01–2019-12-15

Geographic coverage

Geographic spread

Geographic location: Uganda, Africa, Sub-Saharan Africa

Geographic description: Iganga, Uganda

Lowest geographic unit

Municipality

Highest geographic unit

Region

Publications

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.
DOI: https://doi.org/10.1371/journal.pone.0243948

If you have published anything based on these data, please notify us with a reference to your publication(s). If you are responsible for the catalogue entry, you can update the metadata/data description in DORIS.

Dataset
Mortality data of population based CP cohort from Iganga/Mayuge, Uganda

Associated documentation

Description

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.

Version 1

Citation

Hans Forssberg, Angelina Kakooza-Mwesige. Karolinska Institutet, Department for Women's and Children's Health (2021). <em>Mortality data of population based CP cohort from Iganga/Mayuge, Uganda</em>. Swedish National Data Service. Version 1. <a href="https://doi.org/10.5878/xr97-2a37">https://doi.org/10.5878/xr97-2a37</a>

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Data format / data structure

Numeric

Creator/Principal investigator(s)

Hans Forssberg - Karolinska Institutet, Department for Women's and Children's Health orcid

Angelina Kakooza-Mwesige - Makerere University, Department of Pediatrics and Child Health orcid

Time period(s) investigated

2015-03-01–2019-12-15

Data collection

  • 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

Variables

21

Number of individuals/objects

97

Response rate/participation rate

100

Contact for questions about the data

Published: 2021-01-26