Abstract

Background: Thalassemia is a chronic disease requiring lifelong blood transfusion and iron chelation therapy. Poor adherence to treatment can cause a poor outcome and increase heath care cost.

Aim.: To identify parental knowledge about thalassemia, adherence to chelation therapy and predictors of non-adherence to chelation therapy among children with thalassemia major. Methodology: A descriptive cross sectional was conducted at the thalassemia center of the The Children’s Hospital Lahore from January to June 2020 and children aged 4 years -16 years were included. Parents were interviewed using a questionnaire.

Results: Mean age of children was 8.34 ± 3.24 years, 88 (86%) were >5 years of age with a male preponderance 63 (62%). In majority 77 (75.5%) consanguinity was present and in 32 (31%) one or more sibling was affected. Majority 57 (56%) belonged to rural area. Maternal and paternal illiteracy rate was 57 (56%) and 47 (46%) respectively. Parental knowledge of regular blood transfusion was 100%, 75 (73.5%) were fully aware of regular chelation but only 2 (1.9%) were aware of the disease complications. Chelation compliance was significantly associated with maternal and paternal literacy and urban residence (p= 0.002. 0.015. 0.004) respectively.

Conclusion: Parental education and residence in urban areas had a significant association with regular chelation compliance but only few parents were aware of disease complication due to non-adherence to chelation therapy.

Keywords: Thalassemia, compliance, chelation therapy