Knowledge and perception on expanded newborn screening in Sri Lanka among pregnant women attending antenatal clinics in Teaching Hospital Mahamodara

Abstract

Introduction: Unlike in developed countries, there is no established expanded newborn screening (eNBS) in resource-limited settings. In Sri Lanka, the Ministry of Health has adopted screening only for congenital hypothyroidism, critical congenital heart diseases and congenital deafness as a policy in all newborns. Hence, there is a requirement to assess the need for eNBS in Sri Lanka. This requires epidemiological studies of the inherited metabolic disorders (IMDs) before investment to ensure costeffectiveness of the programme and reflections on acceptance by beneficiaries.Objectives: To evaluate the pregnant women's knowledge, attitudes and willingness towards eNBS.Method: A descriptive cross-sectional study was conducted at the Mahamodara Maternity Hospital antenatal clinics, Galle, Southern Province, Sri Lanka. A convenient sample was obtained from the antenatal clinics. A pre-tested intervieweradministered questionnaire was used to assess basic socio-demographic details, knowledge and perception of eNBSResults: A total of 602 pregnant women took part in the study. The mean age was 29±5.7 years; 67% were in the 25-40-year age group; 37.2% were primigravida and 60% were in the third trimester. More than 50% of the study participants knew about the heel prick test done at birth. However, only 34.8% and 28% were aware of the screening for congenital hypothyroidism and congenital heart disease, respectively; 93.6% of mothers had not heard of the term IMD, and only seven were aware of the term eNBS. Nevertheless, more than 80% of participants were willing to screen their babies at birth for underlying IMDs, even if it is available on payment, as the current programme was free of charge to the family. Similarly, 96.2% were willing to screen their babies for incurable diseases.Conclusions: Though most women were aware of the heel prick test done at birth, only a suboptimal proportion of them was aware of the disease/s checked using the test. In addition, there was poor knowledge about the IMDs and eNBS. However, there were positive attitudes towards eNBS.