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. 2025 Jun;16(3):243-254.
doi: 10.1007/s12687-025-00801-7. Epub 2025 May 15.

Lack of provision of social and emotional information about Down syndrome associated with negative prenatal diagnosis experiences

Stephanie Meredith  1 , Harold L Kleinert  2 , Jian Li  3 , Sierra Weiss  2 , Jonathan Drummond  2
Affiliations

Lack of provision of social and emotional information about Down syndrome associated with negative prenatal diagnosis experiences

Stephanie Meredith et al. J Community Genet. 2025 Jun.

Abstract

To determine how physician adherence to recommended practices for discussing Down syndrome (DS) impacts patient experiences, and which of these recommendations most correlate with positive prenatal patient experiences. Online surveys were distributed to mothers of children with DS born between 2016-2021. The descriptions of prenatal experiences were assigned sentiment analysis scores: positive, negative, or neutral. The scores were then compared against the adherence of clinicians to recommended practices for delivering prenatal screening results. Of the 167 patients in this study, over 50% described a negative experience. The odds of having a neutral/positive diagnosis experience were about 18 times greater for those patients whose physicians adhered to all seven social recommendations. The odds of having a positive/neutral screening experience were 11.4 times greater for those patients whose physicians adhered to both emotional recommendations (not saying "I'm sorry" or conveying the diagnosis as bad news"). Most of the variance in the patient diagnosis experience was attributed to adherence to emotional recommendations and social recommendations. To meet the needs of patients, obstetricians need to address emotional, social, and informational needs by providing 1) access to balanced and accurate information about disabilities and 2) being better trained on sensitive communications.

Keywords: Cell-free DNA screening; Disability; Down syndrome; Genetic counselor; Obstetrician; Prenatal diagnosis; Prenatal screening; Trisomy 21.

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Conflict of interest statement

Declarations. Ethics statement: The study was approved for human subjects on 4/6/2020 research by the University of Kentucky IRB (55360). Patient consent statement: The study only included participants who were 18 or older, and participants completed IRB-approved online consent forms. Competing interests: Dr. Harold Kleinert, Jian Li, Sierra Weiss, and Jonathan Drummond have no conflicts of interest to declare. Dr. Stephanie Meredith serves on the advisory board of the National Down Syndrome Congress in a volunteer capacity and the Trisomy Collaborative as a paid consultant and is the parent of an adult with Down syndrome. She has also received remuneration from Down syndrome non-profit organizations and non-profit medical/genetics organizations/programs (National Society of Genetic Counselors, American College of Osteopathic Obstetricians and Gynecologists, American College of Medical Genetics and Genomics, and American Society of Human Genetics) for speaking engagements and associated travel expenses.

Figures

Fig. 1
Fig. 1
Sentiment Analysis Methodology Flowchart (Lucid)
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