NEW STUDY REVEALS THAT CHILDREN WITH CEREBRAL PALSY IN RURAL UGANDA HAVE 25 TIMES HIGHER RISK OF PREMATURE DEATH. THE MAIN CAUSES OF DEATH WERE MALARIA AND ANEAMIA. CHILDREN WITH SEVERE MALNUTRITION AND SEVERE MOTOR IMPAIRMENTS ARE THE MOST LIKELY TO DIE.

The largest study on Cerebral palsy in Africa to date reveals that interventions to prevent malaria infections such as the use of insecticide-treated mosquito nets, coupled with caregiver training and support, including best feeding practices and simple measures to prevent other infections, could potentially reduce mortality in children with Cerebral palsy in this region.

Cerebral palsy (CP) is a developmental disorder and the most common cause of childhood physical disability globally. CP is significantly more prevalent in low-income and middle-income countries like Uganda where the researchers noted a lower prevalence in the older (8-17 years) than younger (2-7 years) age groups as demonstrated in the findings of an earlier study conducted in 2015. https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(17)30374-1/fulltext 

The decline in prevalence of children with CP with increasing age in the 2015 study, led the researchers to hypothesize about the risk of premature death in these children. 

In order to get a better understanding of the situation, a follow-up study was carried out at the Iganga-Mayuge Health and Demographic Surveillance Site (IM-HDSS) in eastern Uganda. Earlier in 2015, the researchers had screened 31,756 children and identified 97 (aged 2–17 years) who were diagnosed as having CP. The children with CP were followed up to 2019 and compared with an age-matched sample of the IM-HDSS general non-CP population (n=41, 319). The rates and causes of deaths in these groups were determined.

The research team found that the rate of death was 25 times higher in the CP group than the general non-CP population sample. The mean age at death among the CP group was 10•2±5•9 years and 7•2±4•8 years among the general non-CP population sample. In the CP group, females and older children (10-18 years) had higher relative risks of death in relation to the non-CP general population. Significantly, in children with CP, there was an almost 7 times risk of death in those with severe motor impairments compared to those with milder ones. In addition, those with severe malnutrition had a more than 3 times higher risk of death than children without severe malnutrition. The causes of death were from common conditions like anemia, malaria and common infections.

The results of this study, are the first of its kind to reveal the true extent of the hidden humanitarian crisis of excessive mortality in the CP child population. Severe malnutrition as one of the risk factors of excessive mortality plays a dynamic multifaceted role, partly aggravated by severe oral motor impairments which lead to chewing and swallowing problems, and the need for special foods and prolonged feeding times. Furthermore, the age pattern for mortality in children with CP confirms this study’s hypothesis with many dying when approaching school age, compared to the non-CP general population. The probable reasons for this may be attributed to caregivers eventually losing hope as these children grow older when they realize that their child will not be cured, or alternatively as a result of the minimal time provided to the child with increasing age (including during supervised feedings), which increases their vulnerability.

The higher mortality among the females may suggest a preferential treatment of boys with CP in Uganda which needs further study. Finally, regarding the causes of death, the frequent occurrence of anemia as a cause of death may signify the interplay of the conditions of underlying malaria infections and severe malnutrition in severely impaired children with feeding problems.

A multipronged approach including raising awareness about this challenge should be emphasized locally and internationally to promote the development of appropriate health and advocacy policies. Although efforts to reduce child mortality are quite evident in the recent decades, targeted interventions to reduce mortality in the CP child population, such as the use of insecticide-treated mosquito nets to prevent malaria infections, provision of easy to use, locally available nutritious foods coupled with caregiver information and support should be encouraged. Reinforcement and regular review of the existing laws and policies related to their specific requirements should be enacted. In general, further research to identify long-term risk factors and immediate causes of death in children with developmental disabilities in the region is also urgently required

These findings are to be formally published in the journal 'PLOS ONE' and entitled “Excessive premature mortality among children with cerebral palsy in rural Uganda: a longitudinal, population-based study”. 

The study was funded by the Swedish Research Council, and Promobilia.

Dr. Angelina Kakooza-Mwesige

Makerere University, College of Health Sciences

Kampala, UGANDA.

On behalf of the Researchers