Introduction: We examined knowledge and attitudes about sickle cell trait (SCT) and sickle cell disease (SCD) in women whose infants were identified with SCT through newborn screening.
Methods: Mothers of infants identified with SCT by newborn screening were contacted 8 to 52 weeks post partum. Mothers were recruited if: (1) they participated in a postpartum newborn screening survey and agreed to be recontacted if their infant had a positive newborn screening result (n = 27); (2) they revealed that their child had SCT during participation in a similar study regarding newborn screening for cystic fibrosis (n = 2); or (3) their child attended a community health center and they did not refuse to be contacted for research (n = 71).
Results: Ninety-five of 100 participants self-identified as black or African American. The average age was 26 +/- 6 years. Eight participants self-reported having SCD and 52 SCT, yet only 34 of the 60 (57%) had received professional hemoglobinopathy counseling. Fewer than half of respondents (45 of 100) knew their SCT status prior to their first pregnancy and less than one-fourth (23/100) reported prenatal discussions of newborn screening. Forty-one respondents were unaware that their child had SCT until notified by a study recruiter (mean age = 116 +/- 64 days). Overall mean knowledge score was high (71%; 95% CI, 69%-73%). Virtually all (> 93%) disclosed their child's SCT status to first-degree relatives and pediatricians but were more discriminating about disclosure to others.
Conclusions: Women are knowledgeable about SCT despite inadequate professional education and counseling. Research is necessary to reduce gaps in reporting maternal and infant SCT results and to understand and promote informed disclosure decisions.