Evidence map›Paper›PMID 35476893›Full record

ArticlePrenatal diagnosis2022

Information is power: The experiences, attitudes and needs of individuals who chose to have prenatal genomic sequencing for fetal anomalies.

Catherine G Kernie, Julia Wynn, Allison Rosenbaum, Jessica de Voest, Stephanie Galloway, Jessica Giordano, Samantha Stover, Lauren Westerfield, Kelly Gilmore, Ronald J Wapner and 5 more

Open access · greenAbstract read
In one paragraph

Article in Prenatal diagnosis, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
4.2field-weighted citation impact, top 7% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed, 11 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors at 6 institutions in 1 country.

Catherine G KernieColumbia University Vagelos College of Physicians & Surgeons, New York, New York, USA.ORCID 0000-0002-8825-7788
Julia WynnDepartment of Pediatrics, Columbia University Irving Medical Center, New York, New York, USA.
Allison RosenbaumColumbia University Vagelos College of Physicians & Surgeons, New York, New York, USA.
Jessica de VoestGeorge Washington University Biostatistics Center, Washington, District of Columbia, USA.
Stephanie GallowayDepartment of Obstetrics and Gynecology, Columbia University Irving Medical Center, New York, New York, USA.
Jessica GiordanoDepartment of Obstetrics and Gynecology, Columbia University Irving Medical Center, New York, New York, USA.ORCID 0000-0002-2265-0691
Samantha StoverDepartment of Obstetrics & Gynecology and Molecular & Human Genetics, Baylor College of Medicine, and Texas Children's Hospital, Houston, Texas, USA.
Lauren WesterfieldDepartment of Obstetrics & Gynecology and Molecular & Human Genetics, Baylor College of Medicine, and Texas Children's Hospital, Houston, Texas, USA.
Kelly GilmoreDepartment of Obstetrics & Gynecology, University of North Carolina Chapel Hill, Chapel Hill, North Carolina, USA.
Ronald J WapnerDepartment of Obstetrics and Gynecology, Columbia University Irving Medical Center, New York, New York, USA.
Ignatia B Van den VeyverDepartment of Obstetrics & Gynecology and Molecular & Human Genetics, Baylor College of Medicine, and Texas Children's Hospital, Houston, Texas, USA.ORCID 0000-0002-0651-5924
Neeta L VoraDepartment of Obstetrics & Gynecology, University of North Carolina Chapel Hill, Chapel Hill, North Carolina, USA.ORCID 0000-0002-2504-9455
Rebecca G CliftonGeorge Washington University Biostatistics Center, Washington, District of Columbia, USA.
Aaron B CaugheyDepartment of Obstetrics & Gynecology, Oregon Health & Science University, Portland, Oregon, USA.
Wendy K ChungDepartment of Pediatrics, Columbia University Irving Medical Center, New York, New York, USA.
Columbia University Irving Medical Center · USBaylor College of Medicine · USColumbia University · USGeorge Washington University · USUniversity of North Carolina at Chapel Hill · USOregon Health & Science University · US

Funding

Prenatal Genetic Diagnosis by Genomic Sequencing: A Prospective EvaluationR01HD055651 · NICHD · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Wendy K Chung, Vaidehi Jobanputra · 2007 to 2026
$16.5M
Clinical Diagnostic Sequencing of Structural VariationR01HD081256 · NICHD · MASSACHUSETTS GENERAL HOSPITAL · PI TALKOWSKI, MICHAEL E · 2015 to 2025
$7.2M
Unmet Needs: Achieving Equity and Support for Parents Pursuing Prenatal Diagnosis in the Genomic EraR01HD105868 · NICHD · UNIV OF NORTH CAROLINA CHAPEL HILL · PI VORA, NEETA L · 2021 to 2025
$3.4M
NICHD NIH HHS R01 HD055651NICHD NIH HHS R01 HD081256NICHD NIH HHS R01 HD105868
6 · The paper itself

Abstract

objectiveThis study sought to evaluate the experiences of individuals who chose to participate in a study and receive prenatal genomic sequencing (pGS) for fetuses with congenital structural anomalies.

methodIndividuals who received research results of prenatal sequencing were invited to participate in semi-structured interviews about their experiences. A constructivist grounded theory approach was used to code and analyze interviews.

resultsThirty-three participants from 27 pregnancies were interviewed. Participants were motivated to enroll in the study to find out more about their fetus' condition and prepare for the future. The waiting period was a time of significant anxiety for participants. Most participants felt relief and closure upon receiving results, regardless of the category of result, and had a clear understanding of the implications of the results.

conclusionParticipants' experiences with pGS were often intertwined with the experience of having a fetus with an abnormality. Participants were satisfied with the decision to participate in research and the support they received from the healthcare team, although waiting for results was associated with anxiety. The healthcare team plays an integral role in setting expectations and validating feelings of anxiety, fear and uncertainty.

Indexed as

AnxietyFetusAttitudeFemaleGenomicsHumansPregnancy

Identifiers

PMID35476893
PMCPMC11561471
OpenAlexW4225099695

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.