Health related quality of life in children aged 2-18 years with congenital heart disease at Muhimbili National Hospital in Dar es salaam, Tanzania

Abstract

BACKGROUND:Congenital Heart disease (CHD) is a prevalent condition worldwide. In Tanzania approximately 7/1000 live births are born with CHD and are among the top ten chronic diseases. Due to its chronicity it affects the quality of life in various ways. The health related quality of life (HRQL) of children with CHD has not been explored in Tanzania. This study is going to demonstrate the HRQL in children with different CHD lesions. It is also going to explore the difference in quality of life among children who had cardiac surgery and compare with those not yet have had cardiac surgery. OBJECTIVE To determine the health related quality of life of children aged 2-18 years with congenital heart diseases attending cardiac clinic at Muhimbili National Hospital in Dar es salaam, Tanzania. METHODOLOGY Descriptive cross sectional study was done to determine the health related quality of life in children 2-18 years with CHD. Disease specific pedsQL cardiac module was used to collect the health related quality of life. Parents’ and childrens’ socio demographic features were obtained by using a specifically designed questionnaire. Data entry was done by using Epi Info and transferred to SPSS version 17 for analysis. A p- value of <0.05 in the ANOVA test when more than three groups were compared on the pedsQLTM 3.0 cardiac module mean scores and a student T test for two groups. For statistical significant difference in ANOVA test a further Bonferroni alpha post hoc test with adjusted p- value of 0.0167 was applied to detect the difference among groups. RESULTS A total of 107 children aged 2-18 years with CHD were recruited by convenient sampling of which fifty seven (53.3%) were female.VSD 34.6% was the commonest CHD. Eight percent of children were found to have co morbid conditions including; Down syndrome, epilepsy and speech disorder. The overall mean scores in all the risk factors assessed were below the cut off score 69.7 of HRQL meaning poor HRQL. There was a significant difference in physical functioning domain of HRQL in the parent report stratified by disease severity (group 1,2 and 3). Multiple comparison test (Bonferroni adjustment) revealed significant difference between group 1 and 3 (mean score of 72 ± 14 against 59 ± 18 and p value 0.0008). Moreover significant difference was also noted in the cognitive domain between group 1 and 2 in the child report (mean scores and standard deviation of 86 ± 15 against 46 ± 4 with a p value of 0.00126) Children with cardiac surgery had better physical functioning compared to those without cardiac surgery with mean scores of 71 ±15 against 64± 18 and a p value of 0.03.Poor physical appearance was noted in children who had cardiac surgery compared to those not yet have had cardiac surgery, their mean scores and standard deviations being 82 ± 20 against98 ±4 with a p value of 0.011. In the multivariate analysis both cardiac surgery and CHD lesion were the predictors of poor physical functioning, beta coefficient of -0.29 with p value 0.00 and -0.42 , p value of 0.00 respectively. CONCLUSION From the findings of this study it may be concluded that children with CHD lesion had poor HRQL. The impact of CHD on the HRQL of the children is significant particularly in the domain of physical functioning and cognitive development. With increased access to cardiac surgery in this country more children will survive into adulthood, however CHD will take its toll on quality of life particularly in the areas of cognitive development and physical functioning. RECOMMENDATION A prospective cohort study is needed to explore the HRQL before cardiac surgery and after surgery, more emphasis on cognitive development in order to establish a temporal relationship.