Pilot study on the "quality of life" as reflected by psychosocial adjustment of children with thalassemia major undergoing iron-chelating treatment in western Taiwan

Comprehensive care for thalassemia major (TM) patients has achieved great advances in the world, yet psychosocial developmental aspects of care in families with afflicted members has made only limited progress. Besides confronting the disease itself, a major task for children with TM is to develop into autonomous, healthy, and functioning adults. An emerging concept in considering the adjustment of children with chronic physical disorders is "quality of life"(QL). To study the QL with regard to reflection by psychosocial adjustment in TM children, we enrolled 55 TM patients undergoing intravenous (IV) and/or oral iron chelation, 39 of whom completed the content on issues related to QL according to Cramer and Devinsky. It was concluded that oral iron chelation can be better adjusted than IV iron chelation for a thalassemic child. This favors its use, but not necessarily in combination with IV iron chelation. Perception gaps that arise from age or generation merit concern. This approach to the study of QL, as reflected by psychosocial adjustment in children with TM, is an excellent method for learning about parental-child adjustment regarding a chronic physical condition such as TM.