Abstract

Just under half of all births in the U.S. are covered under Medicaid insurance. Increasingly, many state public health programs offer noninvasive prenatal screening (NIPS) as first-tier prenatal screening covered under Medicaid insurance or through contracts with private companies. Yet considerable questions remain regarding the cost-effectiveness of NIPS vs. maternal serum screening and its use in a low-health literacy, low-resource population. In order to explore pregnant patient’s views and understanding of prenatal screening, we conducted a qualitative interview study with patients at a federally qualified health center. We recruited from prenatal and maternal-fetal medicine clinics at the University of Florida Jacksonville (UF Health). UF Health offers NIPS to their prenatal patients upon provider recommendation. Patients were included if they were age 18 or older, identified as Black or African American and/or Hispanic or Latina, were currently pregnant, or were pregnant within the past 12 months, and spoke English or Spanish. Interviews were conducted using a semi-structured interview guide and were audio recorded and transcribed verbatim. NVivo12 was used to analyze interview transcripts according to standard qualitative methodology using a grounded theory framework. Eighty-seven patients completed an interview, including 54 (62.1%) non-Hispanic Black, 30 (31.3%) Hispanic, and 3 (3.4%) Hispanic/Black patients. The majority were covered under Medicaid insurance (n=65, 74.7%) followed by private insurance (n=8, 9.2%), financial assistance program (n=2, 2.3%), Tricare/VA Healthcare (n=2, 2.3%), and uninsured/self-pay (n=2, 2.3%). Most participants stated that they had received NIPS and understood its primary utility as determining fetal sex, however, some understood that they were also being tested for Trisomy 21. Some participants indicated that they had NIPS, but their responses reflected that they received quad screening only or vice versa. Pre-test counseling was described as brief, with a few women expressing that the test was mandatory requirement for their prenatal care. Few participants were counseled that a positive screening result would need to be confirmed by chorionic villus sampling, amniocentesis, or umbilical cord blood sampling. No participants were able to recall a chromosomal condition other than Trisomy 21 included in the NIPS panel, but most expressed a perception that they were being tested to rule out fetal anomaly. Many indicated a belief that they were being tested for multifactorial conditions, such as autism, or for developmental delay more broadly. Most participants felt that NIPS was useful for prenatal preparation, such as learning more information about the condition and future medical needs of their child. Only a couple participants indicated they would use NIPS results for a pregnancy continuation decision, with most stating that they intended to continue with the pregnancy regardless of the screening result. Some stated that they were not intimidated by the prospect of having a child with a genetic condition or disability since they worked with children with special needs or had a family member with a similar condition. To the best of our knowledge, this is the largest qualitative study on NIPS in an underserved Black and Hispanic population. Our findings suggest that many underserved patients are unable to make a meaningful distinction between NIPS and maternal serum screening and are not adequately counseled on its scope, limitations as a screening vs. diagnostic test, and implications in the event of a positive result, in accordance with professional guidelines. In contrast to arguments stating that cost-effectiveness of NIPS is supported through elective termination of affected pregnancies, most women stated that they did not intend to use their result for this purpose. These findings indicate that the use of NIPS as a first-tier prenatal screen for fetal aneuploidy may not be appropriate without additional public health investment. Additional resources are also needed to ensure that providers are able to adequately educate and counsel patients with low health literacy on NIPS to meet shared decision-making standards.

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