How to cite this article: Lang CW, Stark AP, Acharya K, Ross LF. 2009. Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis. Am J Med Genet Part A 149A:2424–2429.
Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis†
Article first published online: 28 OCT 2009
Copyright © 2009 Wiley-Liss, Inc.
American Journal of Medical Genetics Part A
Volume 149A, Issue 11, pages 2424–2429, November 2009
How to Cite
Lang, C. W., Stark, A. P., Acharya, K. and Ross, L. F. (2009), Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis. Am. J. Med. Genet., 149A: 2424–2429. doi: 10.1002/ajmg.a.33074
- Issue published online: 28 OCT 2009
- Article first published online: 28 OCT 2009
- Manuscript Accepted: 29 JUL 2009
- Manuscript Received: 28 APR 2009
- Illinois Department of Public Health
- University of Chicago Office of Medical Education
- National Institutes of Health
- newborn screening;
- sickle cell disease;
- cystic fibrosis;
- parental understanding;
Illinois introduced mandatory newborn screening (NBS) for sickle cell disease (SCD) in 1989 and for cystic fibrosis (CF) in 2008. We examined maternal understanding of NBS for SCD and CF, and their knowledge of the genetics, symptoms, and treatments of both conditions. Our methods consisted of conducting interviews of inpatient post-partum women (>18 years and English speaking). Our results showed that of the 388 eligible participants, 34 self-identified as sickle cell carriers, 1 with SCD and 1 as a CF carrier. Almost 3/4 were African American (282/387). Although all but 5 women had prenatal care, only 35% (133/378) recalled their prenatal care provider mentioning NBS, and only 56% (217/388) of participants recalled nursery staff mentioning NBS. There was more self-reported familiarity with SCD (3.32/5) than CF (1.97/5, P < 0.001). Over 2/3 (260/388) of participants could not answer CF knowledge questions because they had never heard of CF. Among those who had heard of the conditions, mean knowledge scores were 66% for SCD (n = 372) and 63% for CF (n = 128). Bivariate analysis identified education, age, race, marital status, and insurance status as statistically significant. After linear regression education remained significant for both conditions. We conclude that in a sample of predominantly African American post-partum women, we found poor understanding of NBS, greater familiarity with SCD, and significant knowledge gaps for both SCD and CF. There are many missed educational opportunities for educating parents about NBS and specific conditions included in NBS panels in both the obstetric clinics and the nursery. © 2009 Wiley-Liss, Inc.