Health-Related Quality of Life in β Thalassemia Major Children in North of Iran

Background: Advances in treatment of thalassemia major have improved the life expectancy of the patients and therefore their quality of life as other chronic diseases. This study was conducted to assess health- related quality of life in these patients in Guilan province. Methods: In a cross-sectional study, thirty-one children, aged 8-12 years, with β-thalassemia major were interviewed in Guilan, northern Iran, from January to March 2016. Source of data were health centers of the province and its satellite centers, blood transfusion organizations, general hospitals and private clinics. Health-related quality of life was assessed by using PedsQL questionnaire. The Questionnaire was completed at baseline by all patients and their parents. T and Chi-square tests were used as appropriated.  Results: Of the 31 children, 58.1% were girls. Total summary score in children was 75.9±20.1. Physical, Emotional, social, school and psychosocial functioning scores were 70.6±24, 73.3±22.9, 85.9±21, 74.1±21.5, 77.7±19.7, respectively. None of the children underwent splenectomy. Sex, Serum ferritin and hemoglobin levels did not show any association with quality of life in this study. Conclusion: Although quality of life in these patients was acceptable, HRQOL showed lower scores in comparison to the healthy population. It seems more social and familial support for increasing the quality of life of these children is surely needed.