Poor functional performance and associated factors among Cerebral Palsy children with Epilepsy attending Mulago National Referral Hospital

Abstract

Introduction: Cerebral palsy (CP) is a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occured in the developing fetal or infant brain. It is one of the most common motor disabilities in childhood; with prevalence estimates globally ranging from 1 to 4 per 1000 live births. As per the definition of CP, several other co-morbid conditions may affect the functional performance of children living with CP. Epilepsy is a common comorbidity among CP children and is often associated with poor seizure control and functional performance, especially following delays in diagnosis and appropriate management. There are however hardly any studies that have evaluated the functional performance of CP children with epilepsy in Uganda and the factors associated with poor functional performance are unknown. This study, therefore aimed to determine the prevalence of poor functional performance, factors associated with and facilitators of poor functional performance among CP children with epilepsy attending Mulago National Referral Hospital (MNRH). Methods: This was a sequentially explanatory mixed methods study that consecutively recruited 136 CP children with epilepsy. Quantitative methods were used to collect data on functional performance and factors associated with poor performance, while qualitative methods provided information on the facilitators of poor functional performance. Quantitative data was collected through a pretested structured questionnaire. Tumaini Child Health (TUCH) screener was used to screen for neurodevelopmental disorders. Clinical examination was done to further assess for vision, hearing and speech as well as the functional performance. Children with Gross Motor Function classification system score(GMFCS) IV and V had poor functional performance. Qualitative data was collected through 10 in-depth interviews with caregivers of children with poor functional performance, and thematic analysis was used to describe the qualitative data. Results: One hundred and thirty-six cerebral palsy children with epilepsy were recruited (82 (60.3%) males, median age was 4 years 7 months, IQR- 2 years 9 months- 8 years). More than half (80 (58.8%)) had poor functional performance (GMFCS levels IV and V). Factors significantly associated with poor functional performance in CP children with epilepsy included; seizure onset within the first month of life (APR 1.26 95%CI(1.08-1.47); P =0.004), having uncontrolled seizures(APR 1.19 95%CI(1.03-1.37); P=0.015), presence of more than two neurodevelopmental disorders(APR 1.13 95%CI(1.02-1.26; P=0.018), and not using an assistive device (APR 0.87 95%CI(0.78-0.97); P=0.010). While facilitators were identified

across all levels of the socio-ecological model, a greater number were found at the interpersonal level. These included limited support, financial constraints, inadequate access to specialized healthcare, and misconceptions about the condition. Conclusion: This study highlights the high prevalence of poor functional performance among CP children with epilepsy attending MNRH which is more marked in the sphere of communication. Poor seizure control, limited access to specialized care, low community awareness, poverty, and poor social support networks are probably contributing to the development of poor functional performance. Targeting these key areas may help to reduce this burden.