Incidence rate and causes of new cases of major β-thalassemia after implementation of national prevention program in Kerman University of Medical Sciences, 2011 to 2019

Thalassemia is a genetic disease with an autosomal recessive pattern. Prenatal diagnosis (PND) and termination of pregnancy in the case of fetus infection is the best way to prevent this disease. This study was performed with aim to evaluate the incidence rate and causes of new cases of major β-thalassemia (MBT) after implementing the national prevention program in Kerman University of Medical Sciences.

This was descriptive and analytical study on health system research. Information of patients (Date of birth, status of other siblings) and carrier couples (year of marriage, kinship relationship, performing screening at the time of marriage, history of surveillance, and causes of the birth of beta-thalassemia patient) was obtained from the data available in the Health Department of Kerman Universities of Medical Sciences from 2011 to 2019. Data were analyzed by SPSS (Version 24) using Fisher's exact test. 

The 9-year incidence rate in the whole region was 0.55 per 10,000 live births. The success rate of the program in the whole region was 84.37%. Fifteen patients were born between 2011 and 2019. The most important cause of MBT incidence was the lack of identification of thalassemia couples and their lack of awareness about their condition (46.6%). Nine (60%) of the patients' parents had consanguineous marriages. There was no statistically significant relationship between causes of new cases of MBT and the level of education and occupation of the patients' parents (P>0.05).

Although the implementation of the prevention program has significantly reduced the number of new cases of MBT, appropriate planning to improve the quality of counseling services and carrier couples care and increase the level of awareness and change the attitude of target groups to eliminate the incidence of the disease is necessary.