Data for: Participating outcome of Akwenda Intervention Program for children with cerebral palsy in Uganda
SND-ID: 2025-10. Version: 1. DOI: https://doi.org/10.48723/enwx-zn78
Associated documentation
Citation
Alternative title
Participation after Akwenda Intervention Program
Creator/Principal investigator(s)
Hans Forssberg
- Karolinska Institutet, Department of Women's and Children's Health
Angelina Kakooza Mwesige
- Makerere University, Kampala, Uganda, Department of Pediatrics and Child Health
Research principal
Karolinska Institutet
- Department of Women's and Children's Health
Principal's reference number
2017-05474
Description
This was a cluster-randomized, controlled, single-blinded study on a cohort of children and young people with CP in the Iganga-Mayuge Health and Demographic Surveillance Site. 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.
The Excel sheet includes the data collected before the intervention started (2021; baseline), and after the 11 months intervention ended (2022; follow-up).
Randomized, controlled, intervention trial.
Baseline data: Sociodemographic information and clinical data including anthropometry, Gross Motor Function Classification System (GMFCS) levels.
Primary outcome: Picture My Participation (PMP); frequency of attendance and level of involvement in 20 activities of daily living.
The Excel sheet includes the data collected before the intervention started (2021; baseline), and after the 11 months intervention ended (2022; follow-up).
Randomized, controlled, intervention trial.
Baseline data: Sociodemographic information and clinical data including anthropometry, Gross Motor Function Classification System (GMFCS) levels.
Primary outcome: Picture My Participation (PMP); frequency of attendance and level of involvement in 20 activities of daily living.
The dataset contains of the following files:
- Data sharing PMP Akwenda.xlsx (48.7 kB)
- Documentation file data sharing PMP.docx
Details about the variables in the tables can be found in the documentation file. Show less..
Data contains personal data
Yes
Type of personal data
Data is pseudonymized. Age, sex, GMFMCS level.
Code key exists
Yes
Language
Unit of analysis
Population
A total of 100 children and young people with CP aged 2-23 years were included (52 males). Most (65) were from a population-based cohort identified in a three-stage screening at the IM-HDSS in 2015. This cohorthas been followed and studied in a series of articles. An additional group of 35 children between ages 2-6 years were conveniently sampled to include younger participants and achieve statistical power. TheCP 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 geographic cluster-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
Time period(s) investigated
2021-07-01 – 2022-11-30
Variables
45
Number of individuals/objects
100
Weighting
No
Response rate/participation rate
94%
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 spread
Geographic location: Uganda
Geographic description: Iganga-Mayuge district, Uganda
Lowest geographic unit
Municipality
Highest geographic unit
Municipality
Responsible department/unit
Department of Women's and Children's Health
Funding 1
-
Funding agency:
Stiftelsen Sunnerdahls Handikappfond
- Funding agency's reference number: F 9/20
- Project name on the application: An innovative intervention for children with cerebral palsy living in low-resource settings
Funding 2
-
Funding agency:
Swedish Research Council
- Funding agency's reference number: 2017-05474
Ethics Review
Other - Ref. UNCST, SS-5173
The study was approved by the Uganda National Council for Science and Technology
Research area
Neurology (Standard för svensk indelning av forskningsämnen 2011)
Pediatrics (Standard för svensk indelning av forskningsämnen 2011)
Occupational therapy (Standard för svensk indelning av forskningsämnen 2011)
Physiotherapy (Standard för svensk indelning av forskningsämnen 2011)
Medication and treatment (CESSDA Topic Classification)
Physical fitness and exercise (CESSDA Topic Classification)
Keywords
Cerebral palsy, Cerebral palsy, Neurology, Occupational therapy, Pediatrics
Elizabeth Asige, Gillian Saloojee, Godfrey Wanjala, Carin Andrews, Lukia H Namaganda, Angelina Kakooza-Mwesige, Diane L Damiano, Hans Forssberg
Outcome of participation in daily living of Akwenda Intervention Program for children and young people with cerebral palsy in Uganda: a cluster-randomized trial
Developmental Medicine and Child Neurology. Accepted 2025-01-17
Saloojee, G., Ekwan, F., Andrews, C., Damiano, D., Kakooza-Mwesige, A., & Forssberg, H. (n.d.). Akwenda intervention programme for children and youth with cerebral palsy in a low-resource setting in sub-Saharan Africa: protocol for a quasi-randomised controlled study. In BMJ OPEN (Vol. 11, Issue 3, pp. e047634–e047634). https://doi.org/10.1136/bmjopen-2020-047634
DOI:
https://doi.org/10.1136/bmjopen-2020-047634
SwePub:
oai:swepub.ki.se:461937
