Health Related Quality of Life among Adolescents with Beta-Thalassemia Major: Issues and Concerns

Abstract

The present study aims to understand and highlight the issues and concerns of adolescents who are suffering from genetic blood disorder of beta-thalassemia. Beta-thalassemia major is a lifelong disease which can be managed by regular transfusions and iron chelation therapy and includes clinical manifestations like delayed puberty, physical deformations, fragility of bones, fatigue, weakness, to name a few. The physical challenges produce various psychological and social challenges like low self-esteem, social isolation, stress about health and future, depression, hopelessness, etc. This impacts the affected individual’s life terribly in many ways. The quality of life being one of them. Health related quality of life is a multidimensional concept which is used to determine well-being in relation to health and disease. In the present study, the health related quality of life of thalassaemic adolescents between the age range of 14-19 was assessed, and other challenges faced by these patients were discussed in an open ended interview with them. The quantitative and qualitative analysis of the findings is discussed with respect to the objectives of the study.