Abstract :
Background: With recent advances for a chronic disease like thalassemia, where lifelong management is required, the quality of life, not just survival gains important. Owing to high burden of thalassemia in Odisha, this study analyses the quality of life in pediatric beta thalassemia major and the factors influencing the same.
Materials and Methods: This was a hospital based cross-sectional study done in a tertiary care hospital, Cuttack during September 2019 to January 2020. Children aged 5-14 years, diagnosed with beta-thalassemia major with regular blood transfusion, were subjected to modified SF-36 questionnaire to assess the quality of life in total and domains- General health , Physical health , Social activities , Limitation of activities, Educational , Psychological and Family aspect. Score above 50 considered as good. Data analysed using SPSS 18.0.Statistical significance was assessed by ANOVA and Chi-square test.
Results: Among 200 cases studied, majority (70.5%) had poor score, with mean being 49.19 6.53. In terms of domain, family aspect led (62.0 15.60), followed by limitation of activities(58.25 27.69), psychological aspect (51.75 12.47), physical health (50.85 14.60), educational aspect (41.92 19.294), general health (41.40 12.32) and social aspect was 38.17 24.20.
Results: A significant association was noted between good quality of life and male gender (p-0.004), mother’s occupation (p-0.013), number of children (p-0.001), higher serum ferritin level (p
Conclusion: Considering the poor quality of life in children with thalassemia major, there is urgent need to focus on holistic approach towards management incorporating educational, emotional and physical rehabilitation, to ensure their productivity in the society.
Keyword :
Beta thalassemia major, Quality of life, children, Modified SF-36 questionnaire, Demographic factors, Socio-economic status, Transfusion dependence