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Principal Investigator: Dr. Angelina Kakooza

Funder: Karolinska Insituet


The CURIE study with the main objective of obtaining information regarding the epidemiology of cerebral palsy (CP) in Uganda, ascertain the risk factors, clinical subtypes, functional severity level (gross and fine motor), comorbidity, explore the conditions of life for children suffering from this condition and develop and evaluate a community based rehabilitation program is being carried out at the Iganga/Mayuge Health and Demographic Surveillance Site (IM-HDSS) in Eastern Uganda.

Study progress so far

A preliminary qualitative study has established the terminology, knowledge, attitudes and practices regarding children living with cerebral palsy in Uganda (Study A); a cross-sectional study has determined the prevalence, the epidemiology of CP, including-clinical subtypes, severity levels and co-morbid conditions (Study B); in particular it has also identified cases for the cross-sectional study (Study C); a cohort for the cross-sectional study on the conditions and services  for children with CP and their families (Study D) is planned to be carried out soon. A randomized , controlled, single masked, community based trial, with two arms, one cluster of villages receiving the community goal directed training and the other cluster the conventional intervention provided by the Uganda government health facilities (Study E) will be carried out in the next phase of the study.

Summary of the results from these studies so far

Qualitative results show that there are a number of terminologies that are used to describe a child with CP in the community. The majority of the terms were derogatory and were linked with the attitudes that the community has towards these children which are heavily stigmatizing. The perceived causes vary from biological to spiritual. The mothers are the main caregivers to such children who seek care mainly for young CP children below 5 years and for the co-existing conditions they have and not for the CP condition itself. There is also paucity for supportive care and rehabilitative facilities for CP management at the district level and no in-service training in CP management for the health staff.

The cross-sectional studies established a crude CP prevalence 2.7/1000 (CI 95%: 2.2-3.3); increasing to 5.8 (CI 95%:4.5-6.9) after adjustment for sensitivity and attrition. There was a dramatic reduction at older age due to fewer severely affected children. Spastic unilateral CP was most common (46%) type; almost half (49%) of the children at 2-8 years had moderate to severe motor involvement while only 29% at 8-18 years. There were few pre-term born children (2%) in the CP cohort, while post-neonatal events were the probable causes in 25%.

Expected benefits from this study

As a beginning, information from this research study will raise awareness of the plight of these children for the policy makers and the community at large using evidence based research.

The study will also provide important information to enable the Ministry of Health and other policy makers use this data in planning, developing strategies for prevention and specific treatment and rehabilitation intervention programs for children with cerebral palsy.

This information will also be useful for advocacy purposes to further guide policy makers in allocation of appropriate resources for the management of these children and hence improve on the quality of life of children with neurodevelopmental disabilities in general and children with CP in particular.

The evaluation of the impact of the planned community based program will direct the research team on how best to address any bottle necks that may impede its effective implementation in other areas of Uganda and determine whether it can be scaled up to other areas in Africa.

We envision future consolidation of all these activities into a center for Neurodevelopmental Disabilities Services and Research at Makerere University College of Health Sciences.

 

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