Evidence map›Paper›PMID 41317930›Full record

ArticleJournal of pain and symptom management2026

How Clinicians Prenatally Discuss Management Options and Outcomes for Congenital Heart Disease.

Samantha Syme, Kelsey Schweiberger, Judy C Chang, Ann Kavanaugh-McHugh, Nadine A Kasparian, Robert M Arnold, Kelly W Harris

Abstract read
In one paragraph

Article in Journal of pain and symptom management, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
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

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
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

7 authors.

Samantha SymeUniversity of Pittsburgh School of Medicine (S.S.), Pittsburgh, Pennsylvania, USA. Electronic address: Sas863@pitt.edu.
Kelsey SchweibergerDepartment of Pediatrics (K.S., K.W.H.), University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.
Judy C ChangDepartment of Obstetrics (J.C.C.), Gynecology, and Reproductive Sciences, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.
Ann Kavanaugh-McHughDepartment of Pediatrics (A.K.M.), Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Nadine A KasparianHeart and Mind Wellbeing Center (N.A.K.), Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
Robert M ArnoldDepartment of Geriatrics and Palliative Medicine (R.M.A.), Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Kelly W HarrisDepartment of Pediatrics (K.S., K.W.H.), University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.

Funding

Vanderbilt Institute for Clinical and Translational Research (VICTR) -Identifying correlates of functional immunity in SARS-CoV-2 convalescent plasmaUL1TR002243 · NCATS · VANDERBILT UNIVERSITY MEDICAL CENTER · PI Paul A. Harris, Wesley H Self · 2017 to 2026
$130.7M
Institutional Career Development CoreKL2TR001856 · NCATS · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI RAY, KRISTIN N, RUBIO, DORIS M · 2016 to 2025
$13.8M
Building Interdisciplinary Research Careers in Women's Health in PittsburghK12AR084218 · NIAMS · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI JUDITH YANOWITZ · 2023 to 2026
$2.2M
Vanderbilt Stimulating Access to Research in Residency (V-StARR)R38HL143619 · NHLBI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI WEBBER, STEVEN A., WILLIAMS, CHRISTOPHER S. · 2018 to 2021
$1.3M
COELOMOCYTES IN C.ELEGANS--CELL FATE DETERMINATIONF32HD008715 · NICHD · CARNEGIE INSTITUTION OF WASHINGTON, D.C. · PI YANOWITZ, JUDITH L · 2000 to 2002
$112k
NCATS NIH HHS KL2 TR001856NCATS NIH HHS UL1 TR002243NHLBI NIH HHS R38 HL143619NIAMS NIH HHS K12 AR084218NICHD NIH HHS F32 HD008715
6 · The paper itself

Abstract

contextA prenatal diagnosis of complex congenital heart disease (cCHD) introduces significant emotional, social, and financial stress for families. Uncertainty about the future is a central source of distress for parents, particularly surrounding management options and anticipated outcomes. Little is known about how fetal cardiologists present management options, address anticipated outcomes, and offer supportive services.

objectiveTo examine how fetal cardiology clinicians discuss management options, anticipated outcomes, and supportive services with parents following a prenatal diagnosis of complex congenital heart disease (cCHD).

methodsInitial fetal cardiology consultations were audio-recorded, transcribed, and analyzed qualitatively. Deductive coding focused on management options (e.g., invasive intervention, comfort care), anticipated outcomes (e.g., quality of life, mortality risk), and supportive services (e.g., social work, peer support, palliative care).

resultsFive fetal cardiology clinicians from one tertiary care institution participated in 19 initial consultations. Management options discussed included invasive intervention and comfort care. Clinicians frequently described anticipated outcomes involving quality of life and mortality risk but rarely used those terms specifically. Families were most engaged during quality-of-life discussions. Palliative care as a consulting service was selectively introduced, often when the CHD diagnosis carried a higher risk of mortality. The service was frequently described as additional support.

conclusionFetal cardiology consultations offer an important opportunity to support families navigating uncertainty following a prenatal diagnosis of CHD. Clinicians approached these conversations with empathy and a focus on long-term outcomes, though discussions about management options varied. There is an opportunity for increased presentation and integration of palliative care consultants as a longitudinal, family-centered resource, regardless of mortality risk, which may enhance supports available to families during this highly emotional period. Ongoing efforts to improve family-centered counseling and resources, such as access to perinatal palliative care, may help ensure families receive comprehensive, values-aligned information across the spectrum of care pathways.

Indexed as

Heart Defects, CongenitalPrenatal DiagnosisAdultFemaleHumansMalePalliative CareParentsPregnancyQuality of Lifecongenital heart diseasefetal cardiologymortalityPalliative careprenatal diagnosisquality of life

Identifiers

PMID41317930
PMCPMC12857192

What OpenQuestion holds

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LicenceCC BY
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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.