Colleen Walsh Lang|Alexander P. Stark|Kruti Acharya|Lainie Friedman Ross
Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis
University of Chicago|University of Chicago|University of Chicago|University of Chicago Medical Center|University of Chicago|University of Chicago Medical Center
abstract illinois introduced mandatory newborn screening nbs sickle cell disease scd 1989 cystic fibrosis cf 2008 examined maternal understanding nbs scd cf knowledge genetics symptoms treatments conditions methods consisted conducting interviews inpatient postpartum women gt18 years english speaking results showed 388 eligible participants 34 selfidentified sickle cell carriers 1 scd 1 cf carrier almost 34 african american 282387 although 5 women prenatal care 35 133378 recalled prenatal care provider mentioning nbs 56 217388 participants recalled nursery staff mentioning nbs selfreported familiarity scd 3325 cf 1975 p lt 0001 23 260388 participants could answer cf knowledge questions never heard cf among heard conditions mean knowledge scores 66 scd n 372 63 cf n 128 bivariate analysis identified education age race marital status insurance status statistically significant linear regression education remained significant conditions conclude sample predominantly african american postpartum women found poor understanding nbs greater familiarity scd significant knowledge gaps scd cf many missed educational opportunities educating parents nbs specific conditions included nbs panels obstetric clinics nursery 2009 wileyliss inc