Factors associated with late diagnosis of Congenital Heart Disease in Kenya

Date of Award


Document Type


Degree Name

Master of Medicine (MMed)

First Supervisor/Advisor

Prof. Gerald Yonga

Second Supervisor/Advisor

Dr. Naomi Gachara

Third Supervisor/Advisor

Dr. Isaac Kihurani


Paediatrics and Child Health (East Africa)


Introduction: Congenital heart disease (CHD) is the most common congenital anomaly (one-third of all congenital anomalies) with a global birth prevalence of 8/1,000 live births. About 30-50% of all CHD can be categorized as those that will result in death or long-term disability if surgery or catheter-based intervention is not done within one year (major CHD) or four weeks (critical CHD). Early diagnosis of CHD with subsequent prompt surgical/catheter-based interventions has been associated with better outcomes. In this study, late diagnosis of CHD is defined as cases of CHD diagnosed after the first year of life. Knowledge on presentations of CHD, rates of late diagnosis and associated factors is required to bridge knowledge and care gaps that currently exist locally.

Research Question: What are the factors that are associated with late diagnosis amongst children diagnosed with CHD in Kenya?

Study Objectives: This study aims to describe the proportion of patients with CHD who are diagnosed late as well as the factors that are associated with the late diagnosis. It also aims to assess access to corrective surgery/catheter-based intervention by children with CHD in Kenya.

Study Methods: This is an analytical cross-sectional study of children 18 years and below diagnosed with CHD on follow up at the three major cardiac referral centers in Kenya (Aga Khan University Hospital, Nairobi, Mater Hospital and Kenyatta National Hospital) between January 2011 and December 2016. A total of 411 Patient files were analyzed after randomly selecting patients from all three referral centers based on the number of patients with CHD on follow up in each facility using the ratio (26:75:75). Patients with CHD were categorized into those who were diagnosed late and those who were diagnosed early. Continuous variables were analyzed using summary statistics such as means (ranges) or median (IQR) and categorical and discrete data were analyzed using percentages/proportions. Tests of association between variables and outcome was performed using chi square for categorical and continuous variables and any variable with p-value <0.25 was included in the model. Multiple logistic regression analysis was used to determine factors associated with the late diagnosis of CHD adjusting for age and sex of the patient. P value of <0.05 was considered statistically significant.

Results: Out of the 411 patients analyzed, 205 (49.9%) were male and 206 (50.1%) were female. The median (IQR) age at diagnosis was 15 (5-48) months and the proportion of patients with CHD who were diagnosed late was found to be 60.6% (95% CI=55.7%-65.3%). The most common lesions found were patent ductus arteriosus 120 (29.2%), ventricular septal defects 116 (28%), atrial septal defects 73 (17.7%) and tetralogy of Fallot 43 (10.4%) with the most common clinical presentations being recurrent pneumonia 77.4%, murmur 76.6%, failure to thrive 24.1% and cyanosis 17%. There were statistically significant decreased odds of late diagnosis among children with a murmur compared to children without murmur (OR=0.872; 95%CI: 0.721-0.920, p-value=0.016). There was also a significant association between parental level of occupation and late diagnosis of CHD with the odds of late diagnosis among children from unskilled parents being five times greater than children from highly skilled parents (OR=4.989; 95%CI=2.247-11.4, p-value<0001). However, there was no statistically significant reduction in the proportion of late diagnosis in patients with CHD with increase in the number of healthcare workers and healthcare facilities per 10,000 population.

Conclusion and Recommendations: Despite the cut off point of one year for late diagnosis, the proportion of patients with CHD who are diagnosed late remains very high in our setting. Screening methods such as pulse oximetry together with physical examination for all newborns and fetal echocardiography screening of high risk pregnancies should be introduced to enhance early detection of CHD. The odds of late diagnosis of CHD were found to be less in children who presented with a murmur most likely because this is a sign that is widely recognized as being specific to cardiac disease. Initiatives to increase the awareness of both healthcare workers and the general public on other symptoms and signs suggestive of cardiac disease should therefore be adopted with the aim of increasing earlier diagnosis and correction of CHD.

This document is available in the relevant AKU library