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Decision-making for congenital anomalies diagnosed during pregnancy: a narrative review

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Abstract

Purpose

The purpose of this narrative review was to assess the limited literature on fetal anomalies diagnosed in the second trimester of pregnancy and parental decision-making and identify sources of information deemed as facilitators and barriers to medical decisions.

Methods

This was a literature review of source material and information about fetal anomalies diagnosed in the second trimester of pregnancy, decision-making, decision tools or aids, and sources of information for anomalies. The search string used explored related peer-reviewed publications and systematic reviews between 2007 and 2024. We also reviewed references from publications meeting inclusion criteria. The search was conducted between June 2022 and February 2024. Exclusion criteria included conference abstracts, non-peer reviewed literature, and articles not available in English language. A total of 77 publications were identified by searching multiple databases using a predefined search string. The search encompassed full text articles from 2007 to 2024 and 11 full-text publications were ultimately included in the review. A list of 45 co-occurring keywords was generated from the included texts, with each keyword having a minimum of two co-occurrences.

Results

Key themes identified included (1) the role of the clinician and need for development of professional knowledge and empathy surrounding discussion of fetal anomalies with patients; (2) information gathering, with individuals reporting use of multiple strategies to obtain information; while the majority found information satisfying, they preferred more details on diagnosis, long-term outcomes of the fetus/child and management of the pregnancy or termination process; and (3) decision-making, the path and process of how individuals made decisions about the pregnancy including quality of life, future fertility, and seeking other people’s experiences.

Conclusion

Many factors contribute to an individual’s decision-making after a diagnosis of a fetal anomalies diagnosed in the second trimester of pregnancy, ranging from personal beliefs and goals to shared experiences of others and access to care. Understanding how sources of information may be deemed both as facilitators and barriers to different individuals during the decision-making process is important for healthcare providers in order to understand how to most effectively support patients. There is a dearth of information on training healthcare professionals to provide support to patients facing these decisions.

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Authors and Affiliations

  1. Department of Obstetrics and Gynecology, New York University Grossman School of Medicine, 550 1stAvenue, New York, NY, 10016, USA

    Jillian Pecoriello, Dona Jalili & Gwendolyn P. Quinn

  2. Vanderbilt University, Nashville, TN, USA

    Anna- Grace Lilly

  3. Georgetown University, Washington, DC, USA

    Clarisa Mendoza

  4. Division of Maternal Fetal Medicine, New York University Grossman School of Medicine, New York, NY, USA

    Christina A. Penfield

Authors
  1. Jillian Pecoriello
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  2. Anna- Grace Lilly
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  3. Dona Jalili
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  4. Clarisa Mendoza
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  5. Gwendolyn P. Quinn
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  6. Christina A. Penfield
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Contributions

J.P. collected, analyzed and interpreted the data and wrote the article. A.G., D.J., and C.M., interpreted the data and reviewed the article. G.Q. and C.P. reviewed the article and supervised the entire research process. All authors read, edited, and approved the final article.

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Correspondence to Gwendolyn P. Quinn.

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Pecoriello, J., Lilly, A.G., Jalili, D. et al. Decision-making for congenital anomalies diagnosed during pregnancy: a narrative review. J Assist Reprod Genet (2024). https://doi.org/10.1007/s10815-024-03112-x

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