Health related quality of life in children with sickle cell disease aged 8-18years attending clinic at Muhimbili National Hospital in Dar es salaam, Tanzania.

Abstract

Background Sickle cell disease (SCD) is prevalent in most of Africa countries, including Tanzania. In Dar es salaam, Tanzania approximately 17% of children entering hospital for any reason are carrier of sickle cell gene3. As a chronic illness and recurrent pain condition, SCD may cause a substantial burden on the daily functioning and wellbeing of children and their families. Less is known on HRQoL in children with SCD in Sub Saharan Africa particular in Tanzania. Study Question; Do children with SCD in countries with limited resources like Tanzania have similar health related quality of life like children without SCD? Broad Objective; To determine HRQoL in children with SCD aged 8-18 years compared to children without SCD in Dar es Salaam, Tanzania. Methodology; This is descriptive comparative cross sectional study that involved children with SCD aged 8-18years.The patients under consideration were enrolled from the ongoing prospective SCD study at MNH.Comparison group were the random sample of siblings who do not have SCD obtained from the database in the same hospital in which the study population was obtained. The study used Generic PedsQL questionnaire for assessing HRQoL. Data entry was done using Epi Info and transferred to SPSS version 16 for analysis. The Independent sample t test and Analysis of variance (ANOVA) was applied to look for the association of HRQoL and factors such as socio demographic factors. Independent sample t test was also used to test for significant differences between children without SCD and the children with SCD. Association between HRQoL and hospitalization was tested using ANOVA. P - Value of less than 0.05 (p <0.05) was considered significant. Results; 100 children with SCD and 99 siblings without SCD aged 8-18 years and their parents were enrolled in this study. Females were 53% in SCD children and 63% in children without SCD. 45% of parents had primary education level and >85% were biological parents in both groups. Children with SCD and their parents scored lower HRQoL as compared to children without SCD, (p<0.001). Total mean score was 77.53 ± 12.9 in SCD children and 98.43 ± 3.5 in children without SCD. Children with SCD described their own HRQoL Significantly better than their parents perceived it to be. Lower age of the children and increased frequency of hospitalization had negative impact on HRQoL of these children. Conclusion and Recommendations; Children with SCD and their parents perceived overall HRQoL and all subdomains to be lower than for children without SCD, therefore Assessment of HRQoL should be included in the guidelines of management of children with SCD as it will help to identify those who need psychosocial support and behavior intervention to promote appropriate functioning and to minimize activities restriction in order to improve their quality of life.