Awareness about thalassemia and feasibility of cascade screening in families of thalassemia major patients

Abstract

Background: The main objective of this study is to assess knowledge and attitude of parents & extended relatives of children diagnosed with Thalassemia major and to evaluate feasibility of screening of extended families for thalassemia trait by correlating their willingness to get screened with actual screening.Methods: This was a cross sectional type of descriptive analytical study, conducted at the thalassemia day care center at a tertiary care teaching hospital in western India among 230 study population using a pre-designed and pre-validated structured questionnaire.Results: We found the overall knowledge score of parents about thalassemia was significantly better than relatives. About 95.83% of parents and only 31.86% of the relatives amongst the study population had adequate knowledge. Majority of study population (84.61% relatives and 100% parents) had positive attitude. The significant contributing factors for knowledge and attitude towards thalassemia were age, marital status, education level, religion and per capita monthly income. 2% relatives agreed to get themselves screened for thalassemia status out of which only 20% got themselves screened.Conclusions: This study has identified key areas which need to be highlighted and emphasized in public awareness campaigns for thalassemia screening in India.