Abstract

Objective: Thalassemia major is a genetic disease with symptoms of a severe and chronic anemia. This disease is one of the most prevalent chronic genetic diseases in the world and the Iran. About two hundred million people are afflicted with this disease all over the world. The tools for evaluation of life quality enable us to have a closer look at the impact of disease on children's life quality. This study is aimed at studying the quality of life from the perspective of the parents and children with thalassemia. Method: Thalassemia major is a genetic disease with symptoms of a severe and chronic anemia. This disease is one of the most prevalent chronic genetic diseases in the world and the Iran. About two hundred million people are afflicted with this disease all over the world. The tools for evaluation of life quality enable us to have a closer look at the impact of disease on children's life quality. This study is aimed at studying the quality of life from the perspective of the parents and children with thalassemia. Findings: The average score of quality of life for these children was 41.01 +/- 22.38 from their perspective and 40.63 +/- 21.04 from their parent's perspective. From the perspective of the children and their parents, there was a significant difference between the average scores of quality of life both in general and in other components of physical, social, emotional, and school performance (0/0001< P). The average score reported by the parents in physical and social components was higher than that reported by the children, and in other components, this score was lower than the score reported by the children. There was no significant statistical difference between quality of life for the girls and boys. In the component of school performance, rural children had a higher quality of life than urban children (0/05< P). Conclusion: Due to the parents' important role in child care, it is suggested for the thalassemia-related authorities to consider the parents' perspectives about improvement of children's quality of life in care planning and provide the parents with the opportunity of participating in planning for child care to promote the children's quality of life.