Date of Award

8-16-2024

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Debera Zvejnieks

Abstract

The Perinatal Case Conference (PCC) at Prisma Health-Midlands Maternal-Fetal Medicine (MFM) is a biweekly multidisciplinary meeting to discuss pregnancies with prenatally identified congenital anomalies. Patients are primarily cared for by MFM and may have appointments with various subspecialists during their pregnancy. The goals of the PCC are multidisciplinary collaboration in planning for the management of each pregnancy and familiarizing each practitioner with the pending cases, so if or when intervention is needed, the clinicians are familiar with the case.

Researchers performed a chart review and surveyed patients whose pregnancies were discussed in the PCC to learn the patient’s perspective of their care. Sixty-six eligible patients were called and/or emailed with the questionnaire. Twenty-three responses were analyzed including 15 free response answers. The questionnaire included Likert scale items assessing preparation for the birth of their child and satisfaction and value for each subspeciality.

Ten of 24 respondents saw genetic counselors and nine gave high scores of value and satisfaction. Eleven did not have genetic counseling sessions, and eight did not think it would have been beneficial for them to have seen a genetic counselor. Free responses brought forward negative views of genetic counselors and misunderstandings of the purpose of genetic counseling as to be the termination of affected fetuses. This misinterpretation of intent serves as a reminder to practitioners to preface conversations about pregnancy management options as providing complete information rather than specific recommendations. Additionally, learning the diagnosis before the birth, allowed parents time to process this new information about their child and prepare for their birth.

Free response questions were coded for five themes–relationship, thorough explanation, trust in clinical judgment, logistics coordination, and delivery experience–with each theme having examples of positive and negative experiences. Themes of relationships and thorough explanation emerged as the most significant recollection of patients’ experience as they were the most frequently mentioned.

The diagnosis of congenital anomalies in pregnancy is an emotional and confusing experience for patients. Multidisciplinary care improves physician decision making and eases patient anxiety. Though survey participants gave high scores of value and satisfaction, emotional support before and after pregnancy is needed.

Rights

© 2024, Mary Elise Nolen

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