Quality Of Life of Children with Thalassemia in Alexandria

Abstract

Thalassemia is one of the most common chronic inherited blood disorder encountered among children worldwide particularly in developing countries. It negatively affects all aspects of children's quality of life (QOL) either physical, emotional or social functioning as well as scholastic achievement. Objective: Assess the quality of life of children with thalassemia at University Children's Hospital in Alexandria. Setting: The study was conducted in the Hematology clinic at the Outpatient Department of Alexandria University Children's Hospital at El-Shatby in Alexandria. Subjects: A convenience sampling of 200 children with thalassemia and their parents who attended the previously mentioned setting and fulfilled the following criteria comprised the study subjects: Confirmed diagnosis with thalassemia, age ranged from 8 to 12 years and free from any other chronic disease. Tools: Two tools were used to collect necessary data namely; Bio-socio-demographic Data of Parents and their Children with Thalassemia Structured Interview Schedule and the Pediatric Quality of Life Scale. Results: Approximately three quarters of children (71.0%) attained low QOL regarding physical functioning. The vast majority of them (94.5%) had low QOL concerning social functioning. Additionally, the highest percentages of those children had low QOL in relation to emotional and school functioning (87.5% and 82.5% respectively). Conclusion: Thalassemia is negatively affecting the children's QOL. Where, the majority of the children and their parents reported low QOL and the minority of them had moderate QOL. Meanwhile, small percent of them had high QOL. Recommendations: Mass media should raise society awareness regarding thalassemia, and health education sessions with updated simplified brochures and counseling should be conducted for parents.