Treatment Adherence and Quality of Life of Thalassemic Children

Thalassemia is a genetic disease in which a defect occurs in the rate of synthesis of α or β chains of hemoglobin leading to premature death of RBCs. Children suffering from thalassemia major may become pale and listless and have poor appetite, unexplained fever within first months after birth. For survival, these children have to undergo blood transfusions every 2–4 weeks depending on the severity of illness combined with iron chelation therapy to remove excess iron from their body due to frequent blood transfusions. These children do not always adhere to the treatment regimen which not only affects their physical health but the overall quality of life and may lead to early death in children. Thalassemia can be cured completely using bone marrow transplantation and cord blood stem cell transplantation. However, this treatment is possible only for a small number of children because of suitable donor and cost of treatment. Care of thalassaemia has been included in 12th Five year Plan of the Government of India. Nurses play a major role in improving the quality of life of children by providing the awareness to parents and children and motivate them to follow the treatment regimen.