Evidence map›Paper›PMID 36791586›Full record

Observational studyJournal of pediatric nursing

Parents' quality of life and health after treatment decision for a fetus with severe congenital heart defect.

Rebecca K Delaney, Alistair Thorpe, Nelangi M Pinto, Elissa M Ozanne, Mandy L Pershing, Lisa M Hansen, Linda M Lambert, Kirstin Tanner, Angela Fagerlin

Registry-linked trialAbstract readObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Journal of pediatric nursing. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04437069 (Improving Patient and Family Health Using Family-Centered Outcomes and Shared Decision-Making), which is not on this map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–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.

NCT04437069 naactive not recruitingnot on this map

Improving Patient and Family Health Using Family-Centered Outcomes and Shared Decision-Making

TypeinterventionalSponsorUniversity of UtahRan2020 to 2026Enrolled135ConditionsPatient Decision Aids, Congenital Heart Disease, Congenital Heart DefectArmsDecision Aid, Values Clarification Exercise
3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
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

9 authors.

Rebecca K DelaneyUniversity of Utah Intermountain Healthcare Department of Population Health Sciences, University of Utah Health, Salt Lake City, USA. Electronic address: rebecca.delaney@hsc.utah.
Alistair ThorpeUniversity of Utah Intermountain Healthcare Department of Population Health Sciences, University of Utah Health, Salt Lake City, USA.
Nelangi M PintoDepartment of Pediatrics, University of Utah, Salt Lake City, USA.
Elissa M OzanneUniversity of Utah Intermountain Healthcare Department of Population Health Sciences, University of Utah Health, Salt Lake City, USA.
Mandy L PershingUniversity of Utah Intermountain Healthcare Department of Population Health Sciences, University of Utah Health, Salt Lake City, USA.
Lisa M HansenDepartment of Pediatrics, University of Utah, Salt Lake City, USA.
Linda M LambertDepartment of Pediatrics, University of Utah, Salt Lake City, USA.
Kirstin TannerUniversity of Utah Intermountain Healthcare Department of Population Health Sciences, University of Utah Health, Salt Lake City, USA.
Angela FagerlinUniversity of Utah Intermountain Healthcare Department of Population Health Sciences, University of Utah Health, Salt Lake City, USA; Salt Lake City VA Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for Innovation, Salt Lake City, USA. Electronic address: angie.fagerlin@hsc.utah.edu.

Funding

Utah Center for Clinical and Translational ScienceUL1TR002538 · NCATS · UNIVERSITY OF UTAH · PI HESS, RACHEL, MAJERSIK, JENNIFER JUHL · 2018 to 2022
$26.0M
TRAINING IN CARDIOVASCULAR RESEARCHT32HL007576 · NHLBI · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · PI Stavros George Drakos, Robin M Shaw · 1985 to 2026
$10.6M
NCATS NIH HHS UL1 TR002538NHLBI NIH HHS L30 HL154237NHLBI NIH HHS T32 HL007576
6 · The paper itself

Abstract

purposeThis exploratory study examines differences in parents' quality of life by treatment decision and the child's survival outcome in the context of life-threatening congenital heart disease (CHD). DESIGN AND

methodsParents of a fetus or neonate diagnosed with severe CHD enrolled in the observational control group of a clinical trial (NCT04437069) and completed quality of life (i.e., contact with clinicians, social support, partner relationship, state of mind), mental and physical health survey measures. Comparisons were made between parents who chose comfort-directed care or surgery and between those whose child did and did not survive.

resultsParents who chose surgery and their child did not survive reported the most contact with their clinicians. Parents who chose comfort-directed care reported lower social support than parents who chose surgery and their child did not survive as well as poorer state of mind compared to parents who chose surgery.

conclusionsSome aspects of parents' quality of life differed based on their treatment decision. Parents who choose comfort-directed care are vulnerable to some negative outcomes. PRACTICE IMPLICATIONS: Decision support tools and bereavement resources to assist parents with making and coping with a complex treatment decision is important for clinical care.

Indexed as

Heart Defects, CongenitalQuality of LifeChildDecision MakingFetusHumansInfant, NewbornParentsSurveys and QuestionnairesCongenital heart defectCopingDecision makingParent quality of life

Identifiers

PMID36791586
PMCPMC10182246

What OpenQuestion holds

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Registered trials

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.