Henny Suzana Mediani , Ikeu Nurhidayah , Lilis Lusiani , Ramdan Panigoro

Abstract

Thalassemia is a major genetic blood disorder that considered a public health problem in Indonesia. While significant advances have been made in the clinical management of thalassemia children over the past few decades, our knowledge of the factors affecting the quality of life of thalassemic children is limited and some previous studies have shown contradictory results. The study aimed to analyze factors impacted to the QOL of school-age thalassemic children in Indonesia. A correlational analytic with a cross-sectional approach was conducted at a district hospital in Sumedang Indonesia from May to July 2017. The PedsQL generic core scale was used to assess 55 school-age thalassemic children with thalassemia major. Data were analyzed bivariate by using Pearson and Spearman Correlation Test and multivariate analysis used multiple linear regression to determine the factor that most impacting the QOL thalassemic children. The findings showed that the average of QOL of school-age thalassemic children was 66.54+12.85. There was a significant correlation between QOL with pre-transfusion Hb level (p=0,018, α=0,05), frequency of transfusion (p=0,000, α=0,05), nutrient status (p=0,000, α=0,05), family support (p=0,004, α=0,05), friends support (p=0,000, α=0,05) and adherence to iron chelation therapy (p=0,016 and α=0,05). Transfusion frequency is the most predicting factor that influences the QOL of school-age thalassemic children. It is suggested that effective transfusion scheduling, family and friends support, and providing adequate education for parents are essential in improving QOL thalassemic children in Indonesia‎.

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