Assessing the Need for a Population-based Screening for Thalassemia in Pregnancy: Systematic Analysis of Evidence from Uttar Pradesh

Abstract

Introduction: Thalassemia and other structural variants of hemoglobin are among the commonest hereditary disorders in India. They pose a great burden on the existing health resources with an estimated 300,000–400,000 babies born every year with a major hemoglobin disorder. The best strategy for reducing the burden of thalassemia is prenatal screening. However, there are no existing universal guidelines for thalassemia screening in pregnancy. This study was planned to evaluate the extent of published work on the subject in the state of Uttar Pradesh (UP), in order to suggest recommendations for the same. The aim of this study is to examine the data on prevalence of thalassemia in the state of UP, find out the cost burden of treating patients with thalassemia major, and to assess data on knowledge, attitude, and practices (KAP) among healthcare professionals dealing with antenatal women with regard to thalassemia screening. Methodology: The study was planned as a systematic review with literature search done using relevant MeSH terms as well as Free-text terms to run a search. The papers were assessed for relevant questions on prevalence, cost analysis, and KAP, from the state of UP. Results: Studies were limited in the designated research period with varying prevalence. Much of the data has the bias of being hospital based which precludes to the assessment of actual prevalence in the state. There are no studies on knowledge, attitude, and practices of healthcare professionals involved in antenatal care with respect to thalassemia. Only one study has looked into the detailed aspects of socio-economic burden imposed on the family due to a member affected by thalassemia major. Conclusion: There is significant economic impact caused by having a thalassemia sufferer in the family. However, the approximate financial burden is difficult to estimate because we have lack of sufficient studies on the subject. There are no studies on knowledge, attitudes, and practices of healthcare practitioners dealing with antenatal women with regard to thalassemia screening and management.