Assessing the role of family well-being on the quality of life of Indian children with thalassemia

BACKGROUND: The association between chronic diseases and psychological problems is well established. As thalassemia is chronic blood disorder with burdensome treatment procedures, patients are likely to have psychological health problems. Many studies reported evidences regarding the quality of life. But, factors influencing the health-related quality of life with focus on psychological well-being were minimally studied. We aimed to find the factors contributing to the health-related quality of life among thalassemia affected children and hypothesising whether the parent’s psychological well-being, sociodemographic characteristics and transfusion interval have an impact on children’s quality of life. METHOD: A cross-sectional analytical study conducted on 125 thalassemia patients and 125 parents (either father or mother) referred to the clinic of Thalassemia treatment center. KIDSCREEN-10 and Ryff Psychological well-being scale is used for measuring the health-related quality of life and well-being of children and parent respectively. RESULTS: We have found the three factors such as family income, children education, and, parent education significantly contributed to the children’s health-related quality of life among thalassemia affected children. The average score of Health-related quality of life among children is 16.28 with a standard deviation of 3.432 and the mean psychological well-being score for the parent is 83.99 with a standard deviation of 11.41. A positive correlation exists between parent psychological well-being and children’s health-related quality of life. CONCLUSION: Family well-being is the foundation for quality of life of the children. It was found that factors such as family income and parents’ and children’s education have a direct association with HRQoL of life of children with thalassemia. However, more studies need to be done in order to ascertain the factors contributing to HRQoL of children with thalassemia to improve the quality of life of thalassemia patients.