Perception of Parents of Children suffering from Thalassemia in Karimnagar District of Telangana state in India

ABSTRACT: Introduction: Thalassemias are a group of inheritable hemoglobinopathies where abnormal hemoglobin is synthesized leading to decreased hemoglobin levels in the body. Thalassemias are classified according to which chain of the hemoglobin molecule is affected. In α-thalassemias, production of the α-globins chain is affected, while in β-thalassemia, production of the β-globins chain is affected. Thalassemias are a grave menace in the modern world which need to be tackled effectively and quickly to improve the health status of people around the world. Objectives: To assess knowledge and awareness of parents of thalassemia patients regarding preventive measures and treatment options available for thalassemia. Methodology: The present study is an observational study design conducted in a district called Karimnagar of Telangana state in India amongst 130 parents of children suffering from thalassemia with the use of a pre-designed direct questionnaire with additional variables. Results : Out of the 130 parents, 68% knew that thalassemia was a hematological disorder, 57 % parents understood the role of heredity in the transmission of the disease, 54% parents were aware that it could be prevented by pre-natal genetic counseling, 73% parents understood that consanguineous marriage was a risk factor contributing to the disorder, 84% parents were made aware of thalassemia only through their healthcare personnel and nearly 64% parents had an idea about various modalities of treatment of the disorder. Conclusion: This study provides an important insight into the level of understanding regarding thalassemia disorders amongst parents and the amount of awareness still required to make a difference in improving the statistics surrounding the same