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.

Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda

“…A large proportion were non-verbal and non-ambulatory and had severe concurrent disorders, including epilepsy. 11,16 Thus, the different study results could be explained by differences in socioeconomic demographics, impairment type and severity, and participant selection. Recruiting participants from schools, as in the study from South Africa, may not provide a representative sample of A Mann-Whitney U test was used to investigate the difference between groups for each activity.…”

Early care and support for young children with developmental disabilities and their caregivers in Uganda: The Baby Ubuntu feasibility trial

“…These include cerebral palsy and other global developmental disabilities which may limit independent mobility and feeding, and are linked to cognitive delay, epilepsy, visual, hearing and behavioral difficulties. Developmental disabilities have long term physical, emotional, social, and financial consequences for the child and family in any context, but particularly in lowincome country (LIC) settings, where availability of, and access to, support services and inclusive early education are often limited and complicated by financial barriers, social stigma and exclusion (4)(5)(6)(7)(8). There is also substantial impact on wider society due to the loss of learning potential and economic productivity, perpetuating poverty in the lowest resource settings (9).…”

“…PEDI missing for 5 in standard care arm, 6 in Baby Ubuntu arm at 6 months and missing for 4 in standard care arm, 2 in Baby Ubuntu arm at 12 months 4. Griffiths sub-quotient scores missing for 3 in standard care arm, 2 in Baby Ubuntu arm at baseline and missing for 4 in standard care arm and 4 in Baby Ubuntu arm at 6 months 5. Anthropometry missing for 1 in Baby Ubuntu arm at 12 months, z-scores below −6 were imputed to have value −6.…”

Promoting functional development for children with cerebral palsy in low‐income countries

“…2 Most concerning was the lack of developmental progress seen amongst those children with milder impairments, who did not mirror the steep developmental progress of their counterparts from HIC populations, particularly in motor skills and mobility. 2 This was most marked amongst the youngest of children, aged 2 to 5 years.…”

“…Andrews et al 2 have examined the functional development of a population-based cohort of children with CP in eastern Uganda. They conducted longitudinal follow-up of children with CP, aged 2 to 17 years who were recruited to an earlier prevalence study.…”