QUALITY OF LIFE AND ITS DETERMINANTS IN TRANSFUSION DEPENDENT THALASSEMIA

Abstract

Background: Patients with transfusion-dependent Beta-Thalassemia carry the burden of chronic illness throughout their lives. Data regarding the impact of disease on the quality of life of these patients is scant. The objective of this study was to assess physical and emotional aspects, family health, school & career functions, and overall quality of life of children with transfusion-dependent thalassemia major and to investigate the determinants of quality of life. Methodology: A total of 365 patients registered in selected thalassemia centres of Peshawar, participated in the study. Data regarding effect of thalassemia on mental health, physical health, family life, career and school was collected using the TranQol questionnaire. Additionally, in a subset of patients (n=40) clinical and molecular genetic information were also collected to assess the role of these variables as determinants of quality of life. Results: Study revealed that thalassemia major affects quality of life negatively. The disease has its manifestations on physical (mean effect 36.05±13.80), emotional (mean effect 42.10±9.42) and family health (mean effect 55.44±8.85) as well as school and career (mean effect 25.85±15.69) of the patients. Moreover, The TranQol scores were positively correlated with higher Hb and hydroxyurea therapy and negatively correlated with serum ferritin levels of patients. Conclusion: Physical, emotional, family and school health are all negatively affected by the transfusion dependent thalassemia. Quality of Life is directly proportional to the Hb levels and use of Hydroxyurea therapy, and inversely proportional to levels of ferritin.
Pak J Physiol 2018;14(3):64–7