Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study

Abstract

Background Studies from high-income countries reported reduced life expectancy in children with cerebral palsy (CP), while no population-based study has evaluated mortality of children with CP in sub-Saharan Africa. This study aimed to estimate the mortality rate (MR) of children with CP in a rural region of Uganda and identify risk factors and causes of death (CODs). Methods and findings This population-based, longitudinal cohort study was based on data from Iganga-Mayuge Health and Demographic Surveillance System in eastern Uganda. We identified 97 children (aged 2–17 years) with CP in 2015, whom we followed to 2019. They were compared with an age-matched cohort from the general population (n = 41 319). MRs, MR ratios (MRRs), hazard ratios (HRs), and immediate CODs were determined. MR was 3952 per 100 000 person years (95% CI 2212–6519) in children with CP and 137 per 100 000 person years (95% CI 117–159) in the general population. Standardized MRR was 25·3 in the CP cohort, compared with the general population. In children with CP, risk of death was higher in those with severe gross motor impairments than in those with milder impairments (HR 6·8; p = 0·007) and in those with severe malnutrition than in those less malnourished (HR = 3·7; p = 0·052). MR was higher in females in the CP cohort, with a higher MRR in females (53·0; 95% CI 26·4–106·3) than in males (16·3; 95% CI 7·2–37·2). Age had no significant effect on MR in the CP cohort, but MRR was higher at 10–18 years (39·6; 95% CI 14·2–110·0) than at 2–6 years (21·0; 95% CI 10·2–43·2). Anaemia, malaria, and other infections were the most common CODs in the CP cohort. Conclusions Risk of premature death was excessively high in children with CP in rural sub-Saharan Africa, especially in those with severe motor impairments or malnutrition. While global childhood mortality has significantly decreased during recent decades, this observed excessive mortality is a hidden humanitarian crisis that needs to be addressed.

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

“…From the initial cohort of 97 children with CP, 82 children had survived. 36 In order to include younger children, we have identified 20 additional children with CP living in the area. From these two samples, 88 children will be recruited to form two comparable groups each with 44 children.…”

Epidemiology of Malnutrition among Children with Cerebral Palsy in Low- and Middle-Income Countries: Findings from the Global LMIC CP Register

“…The consequences of malnutrition in this vulnerable group are diverse. Malnutrition increases susceptibility to infection, reduces cardiac output, increases hospitalization, reduces social participation and quality of life, and lowers the probability of survival [5,6,[11][12][13]. Nutrition intervention is therefore crucial and should be included in planning/designing an intervention package for children with CP.…”

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

“…Mean age at death was 10 years 2 months. Nine individuals who died were in GMFCS levels III to V 18 . Another child was unavailable for the 2015 assessment; thus, the number of study participants was 81 (33 females, 48 males) aged 2 to 17 years (mean 8y 6mo, SD 4y 6mo).…”

“…2 Conversely, children with CP in LMIC have limited access to health and rehabilitation services and are vulnerable to medical conditions that may restrict their development, including malnutrition, malaria, and untreated epileptic seizures. 10,18 Children and young people in our cohort had very poor access to adequate medical treatment, rehabilitation services, assistive devices, and education. 10 Unfortunately, this situation is repeated in many low-resource settings with shortages of health care and rehabilitation services for children with disabilities.…”

“…In HIC, from an early age children have access to medical treatments and interventions aiming to stimulate development and improve motor and self‐care skills 2 . Conversely, children with CP in LMIC have limited access to health and rehabilitation services and are vulnerable to medical conditions that may restrict their development, including malnutrition, malaria, and untreated epileptic seizures 10,18 …”