Functional development in children with cerebral palsy in Uganda: population-based longitudinal cohort study

Abstract

Aim: To follow the functional development of a population-based cohort of children with cerebral palsy (CP) in rural Uganda and compare their development with the developmental trajectories of children from high-income countries (HIC). Method: Eighty-one children (33 females, 48 males) aged 2 to 17 years (mean 8y 6mo, SD 4y 6mo) with CP were initially assessed in 2015 and then 4 years later using the 66-item Gross Motor Function Measure (GMFM-66), Pediatric Evaluation of Disability Inventory, Ugandan version (PEDI-UG), and functional classification systems. We calculated actual and reference scores (level of deviation from the developmental trajectories in HIC). A Wilcoxon signed-rank test was used for statistical analyses. Results: Children and young people with CP in Uganda exhibited no differences in scores between the first and second assessments for the GMFM-66 and PEDI-UG mobility skills, whereas they exhibited increased PEDI-UG social function (p<0.001) and self-care skills scores (p<0.001). Reference scores were more negative at the second assessment than at the first for the GMFM-66 (p=0.002) and PEDI-UG mobility (p=0.036) but not for PEDI-UG self-care. The increased difference in reference scores over the 4 years was primarily driven by younger children (2–5y) and children with milder impairments. Interpretation: The increased difference in reference scores between assessments suggests that children with CP in Uganda develop motor skills at a slower rate than peers in HIC. Limited access to health care and rehabilitation likely contributed to the lower scores and slower rate of development.