Evaluation of the Impact of a Web-based Educational Tool on Awareness of Newborn Screening and Carrier Testing

Introduction: There is considerable lack of awareness of newborn screening (NBS) among patients in the prenatal setting. Only about 20 states have designed specific educational materials on NBS that are distributed during pregnancy. Also, previous studies have shown that African American women receiving prenatal care believe that screening for sickle cell disease is beneficial, but they do not personally find themselves at an increased risk to have a child with sickle cell disease. To increase awareness of newborn screening and carrier screening for sickle cell disease, cystic fibrosis, and the thalassemias, we developed a website called My Baby’s Health. This website provides education on NBS and carrier screening that is tailored to the patient’s ethnicity. The goal of this study is to evaluate this method of educating pregnant women on newborn screening and carrier testing. \ud Methods: Women in their 1st or 2nd trimester of pregnancy were approached to access the My Baby’s Health website on a computer kiosk at the clinic. They were encouraged to take brief surveys before and after reading the information on the site. The pre-website survey asked questions on the patient’s previous knowledge of sickle cell, cystic fibrosis, and the thalassemias, carrier testing, how these conditions are inherited, and how newborn screening is performed. The follow-up survey asked the same knowledge-based questions on the genetic conditions and newborn screening, as well as questions on the participant’s opinion of the site. \ud Results: Twenty-five participants completed both pre-and post-website surveys. Knowledge of NBS and carrier testing did improve on the post-test, and all individuals found the website at least somewhat helpful.\ud Conclusion: The website is helpful in increasing knowledge of sickle cell disease, and all participants found it at least somewhat useful. However, one of the main challenges is implementing this website into the workflow of a clinic so that it has maximum benefit. Using educational tools like this website may have a public health benefit by decreasing disparities in NBS services across the United States, since lack of awareness can lead to anxiety and failure to comply with recommendations for follow-up.\u