Assessing the Impact of the Cures Act Final Rule: Patient Perceptions of Receiving Prenatal Cell-Free DNA Screening in the Patient Portal
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Authors
Do, Nguyen Huong
Lin, Joy
Parrott, Lindsey Claire
Issue Date
2025-05-01
Type
thesis_open
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Keywords
Cures Act , Final Rule , patient portal , prenatal screening , cfDNA , Congenital, Hereditary, and Neonatal Diseases and Abnormalities
Counseling
Genetics and Genomics
Health Communication
Health Information Technology
Health Policy
Maternal and Child Health
Medical Genetics
Obstetrics and Gynecology
Alternative Title
Human Genetics Theses
Abstract
The 21st Century Cures Act Final Rule, implemented in April 2021, mandates the immediate release of electronic health records, including prenatal cell-free DNA (cfDNA) screening results, through patient portals. This study examines the impact of this policy on prenatal patients’ experiences with accessing cfDNA results electronically before provider contact. A single survey was administered at Montefiore Medical Center and the University of Pennsylvania Health System to retrospectively assess patient levels of anxiety, relief, and confusion at various stages of the testing process. Findings indicate a significant decrease in anxiety levels from baseline among participants who accessed their normal results through the patient portal before provider contact (p < 0.0001). Similarly, those who first viewed their results with a provider experienced reduced anxiety (p < 0.01). However, there was no significant difference in anxiety reduction between the two groups (p = 0.49), nor was there a significant change in confusion (p = 0.28) or relief (p = 0.58) after speaking with a provider. Participants who accessed results through the portal first were significantly more likely to prefer receiving future results the same way compared to those who initially received results from a provider (p = 0.048). While many participants favored direct portal access, some expressed a preference for provider-mediated disclosure in the case of an abnormal result. A subset of participants reported difficulty interpreting their results due to technical language, and a few unintentionally discovered fetal sex through portal access, underscoring the need for customizable result release options. Future research should explore the experiences of patients receiving abnormal results and assess the broader impact of the Final Rule on genetic counseling practices.
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