Age related assessment of the status of clinical care offered to children with down syndrome at Kenyatta national hospital

Abstract

Background: Down syndrome, a common chromosomal disorder is the leading cause of learning disabilities in children. The median survival of individuals with Down syndrome has increased considerably in developed countries, but this may not be the case in developing counties. Despite clear international guidelines on the follow-up and management of down syndrome children,their care and follow up locally remains haphazard. Objective: To evaluate the status of care and clinical evaluation of children with Down syndrome at Kenyatta National Hospital. Methods: This was a Descriptive Cross-Sectional study involving children with Down syndrome from birth to 18 years in paediatric wards and outpatient clinics at Kenyatta National Hospital. We administered guided questionnaire and reviewed their documented files on continuity of care given to them. Data was coded and entered into SPSS version 23.0. We employed descriptive statistics like means and proportions to analyze the sociodemographic characteristics of the respondents. Cross-tabulations with chi-square correlation was used to establish the relationship between variables like status of evaluation, diagnosis at evaluation and care given to the children. Results: Out of the 101 children recruited for the study, 60 (59.4%) were males. The mean age of the respondents was 2.56 years (range 7 weeks-15 years). The primary caregiver was the mother in 94.1% of cases. Majority of the children were not done thyroid assessment (63%), cardiac assessment (49%) and ophthalmological assessment (91%). For those who had been evaluated for congenital anomalies, most evaluation was done at less than 1 year of life. Only 7.1% had normal milestone development. Of the 92.9% who had delayed milestones, 60% were on follow up at physiotherapy and speech therapy clinics. Conclusion: This study has found a significant proportion of children with Down syndrome who are not followed up or evaluated as per the known guidelines. We recommend more education of clinicians to ensure these children get care to avoid long term complications which are associated with high mortality and morbidity.