Abstract
INTRODUCTION: Thalassemia is a hereditary condition that causes chronic anemia and is a serious public health concern globally. Quality of life is a concept to help healthcare professional understand the impact of disease or treatment of life. While many quality of life studies have been performed to improve patient care in developed countries, such research and their practical implementation are limited in developing countries such as Indonesia. OBJECTIVE: This study aimed to assess the quality of life in adolescent with thalassemia in Indonesia, and determining its main clinical and demographic correlations. METHODS: This was a cross-sectional study. Data were collected between December 2020 and May 2021 from patients diagnosed with beta thalassemia in Indonesia. The study involved adolescent diagnosed with thalassemia major and had been officially recorded in the thalassemia association records at least three months prior data collection. TranQOL was used to measure quality of life. Linear regression with enter method was used to determine factors associated with quality of life. RESULTS: showed that 63% of thalassemic adolescents were aged at 10 to 15 years old and 76% of them had diagnosed with beta thalassemia at aged less than one year old. About 54% (n = 130) of the sample were boy and 45% (n = 108) were junior high school. The highest mean score was reported for physical health (58.3 ± 14.8) and the lowest score was reported for the school and career functioning (52.6 ± 14.3). Age, gender, comorbidity, and hemoglobin concentration explained 10.5% of the variances in the total quality of life. CONCLUSIONS: The results of this study that thalassemia has a detrimental impact on the quality of life of Indonesian adolescents. Healthcare providers must expand their access to information and abilities in order to fulfill new nursing responsibilities as genetic educators and counselors.