Cluster-randomized trial on Akwenda Intervention program for children and young people with cerebral palsy in Uganda: functioning and activity outcomes
Documentation files
Documentation files
Citation and access
Citation and access
Data access level:
Creator/Principal investigator(s):
Research principal:
Principal's reference number:
- 2017-05474
Data contains personal data:
Yes
Type of personal data:
Data is pseudonymized. Age, sex, GMFMCS level, anthropometric data, socio-economic data.
Code key exists:
Yes
Sensitive personal data:
Yes
Citation:
Language:
Copyright:
Method and outcome
Method and outcome
Unit of analysis:
Population:
A total of 100 children and young people with CP aged 2-23 years were included (52 males). Most were from a population-based cohort identified in a three-stage screening at the IM-HDSS in 20152 which has been followed and studied in a series of articles.10,13-16 An additional group of 27 children between ages 2-6 years were conveniently sampled to include younger participants and achieve statistical power. CP diagnosis was confirmed by a child neurologist using the European CP surveillance definition.
Time method:
Study design:
- Registry-based randomised controlled trial (R-RCT)
Description of study design:
This was a quasi-randomized, controlled, single-blinded study on a cohort of children and young people with CP in the Iganga-Mayuge Health and Demographic Surveillance Site (IM-HDSS) covering a population of approximately 80,000 inhabitants . The CP cohort was divided in two arms: one receiving the Akwenda Intervention program, and the other serving as control waiting to receive the intervention the following year. Children with seizures in both groups were provided anti-seizure medications. Outcomes were assessed prior to and after the intervention period.
Sampling procedure:
Description of sampling:
Population based study on all children and young people with cerebral palsy aged 2-23 living at the IM-HDSS.
Time period(s) investigated:
Variables:
40
Number of individuals/objects:
100
Weighting:
No
Response rate/participation rate:
94%
Description of the response rate/participation rate:
Of the 100 participants enrolled in the trial, 94 completed the study: 48 in the intervention group and 46 in the control group. In the intervention group two participants withdrew while three children in the control group were deceased at follow-up and one child withdrew.
Data format/data structure:
Geographic coverage
Geographic coverage
Geographic location:
Geographic description:
Iganga-Mayuge district, Uganda
Lowest geographic unit:
Municipality
Highest geographic unit:
Municipality
Administrative information
Administrative information
Responsible department/unit:
Department of Women's and Children's Health [K6]
Contributor(s):
Ethical Review
Ethical Review
Reviewer:
- Other
Registration number:
UNCST, SS-5173
Ethical review information:
The study was approved by the Uganda National Council for Science and Technology
Funding
Funding
Funding agency:
- Stiftelsen Sunnerdahls Handikappfond
Award number:
F 9/20
Award title:
An innovative intervention for children with cerebral palsy living in low-resource settings
Funding agency:
- Swedish Research Council
Opens a new window at ror.org.
ROR
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.
Topic and keywords
Topic and keywords
CESSDA topic classification:
Swedish Standard Classification of Research Subjects 2025:
Keywords:
Relations
Relations
Related research data:
Publications
Publications
Citation:
DOI:
SwePub:
Metadata
Metadata
