Quality of Life in Thalassemia Major

Excerpt

Thalassemia is the most frequent hemoglobinopathy. The carrier state in our country varies between 0 and 17% with average of nearly 3.5%. Over the years it has been estimated that 10,000–15,000 children with thalassemia are born every year in India [1]. The principles of treatment have been well defined which include (a) maintaining hemoglobin between 9 and 10 g/dl by repeated packed cell transfusion (b) regular chelation therapy to maintain serum ferritin around 1000 ng/dl (c) preventing the development of complications of the disease or secondary to therapy and (d) ensuring normal growth and development [2]. This conventional treatment is required for life-long. The main objective of any chronic life-long treatment is to maintain good quality of life as close to near normal life. Repeated visits to hospitals for regular blood transfusion, cost of chelation therapy, repeated laboratory tests for monitoring therapy and for early detection of any side-effects or complications are likely to affect the quality of life (QoL) of these children. Life-long costly therapy along with poor QoL will have adverse impact on the family. Specific tools for assessing QoL in children with thalassemia major have not been developed. However following general tools to assess the QoL have been used. …