Cerebral palsy in Uganda : prevalence, mortality, functional development, access to services and wheelchair intervention

Abstract

Background and aim: Cerebral palsy (CP) is one of the most common causes of childhood physical disability, but little is known of children and young people with CP living in low and middle-income countries (LMIC). The studies in this thesis are some of the first population-based studies on CP from sub-Saharan Africa. This PhD project aims to describe the prevalence, mortality, functional development and access to care for children and youth with CP in Uganda, and to explore a strategy for wheelchair intervention in a LMIC.

Methods and participants: We did a three stage screening of 31 756 children living in the Iganga/Mayuge Health and Demographic Surveillance Site (IMHDSS), and identified 86 children that were diagnosed with CP, in addition 11 children were found in a triangulation using village key informants. These 97 children were included in a CP cohort, described in study I-IV. Study I and III describe the prevalence, time of injury, functional impairments, care-seeking behaviour and access to services. Study II and IV follow the cohort over a four-year period investigating functional development and mortality. In paper V we conveniently sampled 32 children to be included in an exploratory intervention study testing a goal-directed support program for donated manual wheelchairs.

Main findings: The crude prevalence of CP per 1000 children was 2.7 (95% CI 2.2-3.3). The CP prevalence after triangulation was 3.1. The CP prevalence decreased with increasing age, due to a decrease of children with more severe motor impairments. Timing of brain injury was postneonatal (25%) and preterm (2%) and the rest were considered full term. For the children that could not walk 8% had wheelchairs and none had walkers. The children had no assistive devices for communication, vision or hearing. One third of the children had epilepsy, and the treatment gap for epileptic medication was 61%. One third of the children attended school, and school attendance decreased with associated impairment and lower gross motor function. Care seeking for child’s motor impairment was low among caregivers, the main barriers to seeking care were lack of money, lack of knowledge and having lost hope. Fifteen children in the CP cohort died over four years. The mortality rate ratio was 25.3 for children with CP compared to the general population. The risk of death for children with CP was higher for children with severe motor impairment and severe malnutrition. The most common causes of death were anemia, malaria and other infections. Children with CP in Uganda had a slower development in mobility and gross motor function compared to children in HIC, because children with mild motor impairments and younger children (2-5 years) did not follow the steep developmental trajectories from high-income countries (HIC). The goal achievement of set goals for wheelchair use in the intervention was high at 82.6% to 100%. At the start of the wheelchair intervention 12/32 participants had no daily activities other than eating and hygiene, this deceased to 1/31 after the intervention. The main advantages of the wheelchairs according to the caregivers were; not having to carry their child, easier to bring their child, easier feeding, being able to change child’s position, increased social interactions with other children and child being happier.

Conclusions: The prevalence of CP in Uganda was higher than in HIC, but this is an underestimate due to high mortality. Children with CP were 25 times more likely to die than children in the general population. Children and young people with CP in Uganda had a slower development in mobility and gross motor function compared to their peers in HIC, this is probably because of their poor access to rehabilitation, assistive devices, health care and education. The wheelchair intervention showed promising results with high attainment of set goals, increased participation in activities, improved positioning, improved mobility and high satisfaction. The findings from this thesis highlight the urgent need to prioritize research and interventions for children with CP in low-income settings. In the current situation not alone do they not thrive but they are struggling to just survive. Directing efforts towards this group has the potential to reduce mortality, increase participation and help the children achieve their developmental potential.