Awareness about thalassemia and its management among the caregivers of the thalassemia patients of Punjab and Chandigarh, India

Background: β-thalassemia is an autosomal recessive condition that causes a reduction in the production of haemoglobin. Despite their short lifespans, thalassemia patients must rely on routine blood transfusions throughout their lives. They suffer from a variety of health issues, the majority of which are caused by iron overload complications. It places a significant financial and psychological strain on both patients and their caregivers, and their perceived knowledge of the disease play a significant role in controlling and enhancing their health-related quality of life. Objective: To determine if caregivers of transfusion-dependent thalassemia patients are aware of thalassemia and how to manage it. Methods: The study examined the caregivers of 105 North Indian thalassemia patients who got blood transfusions on a regular basis in hospitals in Patiala, Punjab, and Chandigarh. With prior informed consent, caregivers were interviewed to evaluate their knowledge of thalassemia and its management with their socio-demographic characteristics. The knowledge of each caregiver was rated using a scoring system and was correlated to the caregiver's SES and education. The data was analysed using the SPSS version 20. Results:  The majority of caregivers had sufficient knowledge about thalassemia and their comorbidities, premarital screening, treatment modalities, iron overload, and chelation therapy.