Abstract:
Introduction: Thalassemia is an inherited hemoglobin disorder. There are two types; thalassemia
major and minor. Thalassemia major directly affects children’s physical, emotional, social and school
functions. Health Related Quality of Life (HRQoL) is an important indicator to assess the health of
human. Methods: A cross sectional study was conducted using 60 children (age 2-12 years) with
thalassemia major who attended clinics in two selected hospitals in Sri Lanka from July to September
2018. Demographic data and risk factors were collected using a self-administered questionnaire. HRQoL data were collected using the Pediatric Quality of Life Inventory Version 4.0 Generic Core
Scale. Data were analyzed using SPSS. Results: Mean values of the total functioning scores of
physical, emotional, social and school were 89.42 (±9.20), 87.83 (±10.43), 95.00 (±7.53) and 78.75
(±14.13) respectively. Age of the children was significantly associated with emotional functioning
(p=0.046), school functioning (p=0.023), psychosocial health (p=0.021) and the total summary score
(p=0.006). Total number of blood transfusions per year of the patient was significantly associated
with physical functioning (p=0.002), psychosocial health (p=0.045) and total summary score
(p=0.034). Conclusions: Age and the total number of blood transfusions per year significantly affect
the HRQoL of children with thalassemia major. Gender, type of iron chelation and age at first blood
transfusion did not affect HRQoL of the children.