MD/MPH Candidate Class of 2026 Northwestern University The Feinberg School of Medicine Chicago, Illinois, United States
Background: Advancements in prenatal diagnosis and maternal fetal surgery (MFS) have expanded options available to pregnant people carrying fetuses with prenatally diagnosed congenital anomalies. The decision to pursue prenatal therapy for a fetus is thought to be an important and dynamic process between a patient and their clinical team. Objective: There are limited data describing clinicians’ involvement in patient decision-making. Understanding the decision-making process is paramount for clinicians to improve counseling and provision of care. We set out to better understand clinician perspectives on the decision-making process for patients considering MFS. Design/Methods: Semi-structured interviews were conducted at a midwestern fetal treatment center (FTC) with clinicians who regularly counsel patients concerning decisions to pursue MFS for the conditions of myelomeningocele, congenital diaphragmatic hernia, and twin-to-twin transfusion syndrome. Audio recordings were transcribed and analyzed using inductive thematic analysis. Findings were reviewed by the research team for concordance. Results: 19 interviews were conducted with individuals from multiple clinical roles: fetal surgery, neurosurgery, neonatology, maternal-fetal medicine, nursing, social work, and genetic counseling. Thematic analysis revealed group concordance on the efficacy of multi-disciplinary counseling, specified unique roles played by team members, and highlighted shared strategies utilized to individualize counseling. Clinicians described difficulty in effectively communicating risks associated with MFS and observed variation in the uncertainty patients are willing to accept. Many clinicians expressed concern over the adequacy of counseling and expressed feeling a need to temper patient hope if it felt incongruent with the clinical reality. Factors thought to be important to patient decision-making included predicted neurologic outcomes, patient opinions prior to FTC presentation, engagement with online resources, financial and legal constraints, and potential consequences for existing children or future pregnancies.
Conclusion(s): This study highlights clinicians’ perspectives of the complex decision-making process experienced by patients when considering MFS. Clinicians reported variation between families in their views of and approaches to MFS, thereby necessitating individualized counseling and discussion of various factors important to patients’ autonomous choices. Developing consistent communication strategies and a deeper understanding of patients’ decision-making processes has the potential to transform counseling.
