OB/GYNs are crucial to the care of women with SCD for both prenatal screening and pregnancy management. Prenatal screening of new mothers and their partners can potentially identify people with the trait or the disease who would otherwise be missed by newborn screening, such as immigrants. Although improved management practices have reduced the adverse outcomes associated with pregnancy in women with SCD, there is still evidence from population-based studies that these women continue to be at increased risk of poor maternal and fetal outcomes such as preeclampsia, infection, preterm labor, fetal growth restriction, and fetal death [10–12]. As a consequence of these risks, healthcare providers that encounter these patients need to have a foundation of knowledge on SCD and its management in order to provide appropriate care for this population [13, 14].
Nonetheless, most studies regarding provider knowledge of SCD have focused on assessing knowledge of newborn screening, which many prenatal care providers believe falls under the purview of pediatricians [15, 16]. To our knowledge, this is the first study to assess the knowledge of sickle cell disease prenatal screening and related practice patterns among OB/GYNs.
The College has established guidelines for the management of hemoglobinopathies in pregnancy, which specify that women of African, Mediterranean, and Southeast Asian descent should be screened for hemoglobinopathies; that if found to be carriers, these women should be referred to genetic counseling; and that women with SCD should be prescribed 4 mg of folate supplementation daily [17]. In spite of this, we observed that while 97.4% of respondents regularly screened people of African descent, only 52.9% regularly screened people of Mediterranean descent, and 30.1% regularly screened people of Asian descent. Additionally, only 56.2% of respondents knew the correct amount of folate to prescribe to pregnant women with SCD. The College also recommends that couples at risk of having a child with a hemoglobinopathy be referred to a genetic counselor for a review of prenatal testing and reproductive options. We observed that 89.5% of respondents reported that they routinely referred couples to genetic counseling if both screened positive for SCT. This limited knowledge of SCD was consistent with the findings of a study of family health practitioners in Brazil, in which less than 75% correctly answered knowledge questions regarding SCD epidemiology, clinical manifestations and management [18].
The reason for the poor compliance with the College guidelines is unclear, considering that 82.7% of respondents reported that the College publications were an important source of information on blood disorders.
However, given that 19.6% to 39.3% of respondents believed training on SCD screening, assessment and treatment was barely adequate or inadequate, there may be an opportunity to enhance this knowledge via more robust training and medical education on SCD. There is evidence that interventions to increase provider knowledge regarding SCD can be effective [19]. Oyeku et al. [20] demonstrated that simple education strategies such as mailed materials or interactive seminars can increase provider knowledge of SCD newborn screening result management and increase provider confidence in providing newborn screening follow-up care. Our study suggests that an option for educating practicing OB/GYNs on SCD would be through publication of educational materials in OB/GYN specialty organization publications.
Our study was limited by several factors. CARN members, a group of physicians predisposed to participate in research studies, comprised the majority of respondents. The response rate of 42% was relatively low, but while this rate is comparable to other studies that included members of CARN [21, 22], it may have introduced responder bias and limited generalizability of the finding. Unfortunately, demographic information on non-respondents was not readily available for comparison, so the representativeness of the respondent sample could not be assessed. Also, the screening and management practice questions were restricted to the relatively small number of respondents who had provided care to 1 or more patients with SCD in the previous year. This could lead to bias in that providers who have seen patients with SCD may be primed to perform prenatal screening; therefore, these findings may have been an overestimation of the quality of management practices of the general population of OB/GYNs. Finally, since practice behaviors were assessed by self report, our assessment of these behaviors may have been subjective.
