Evidence map›Paper›PMID 37238322›Full record

ArticleChildren (Basel, Switzerland)2023

Framing the Family: A Qualitative Exploration of Factors That Shape Family-Level Experience of Pediatric Genomic Sequencing.

Hadley Stevens Smith, Emily S Bonkowski, Madison R Hickingbotham, Raymond Belanger Deloge, Stacey Pereira

Abstract read
In one paragraph

Article in Children (Basel, Switzerland), 2023. 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. 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

5 authors.

Hadley Stevens SmithPRecisiOn Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA 02215, USA.ORCID 0000-0003-1247-6535
Emily S BonkowskiInstitute for Public Health Genetics, University of Washington School of Public Health, Seattle, WA 98195, USA.ORCID 0000-0001-9886-4082
Madison R HickingbothamPRecisiOn Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA 02215, USA.ORCID 0000-0002-4536-4313
Raymond Belanger DelogeDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX 77030, USA.
Stacey PereiraCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.ORCID 0000-0001-6541-3904

Funding

Heterogeneity of preferences for and outcomes of pediatric genomic sequencing by race and ethnicityR00HG011491 · NHGRI · HARVARD PILGRIM HEALTH CARE, INC. · PI SMITH, HADLEY STEVENS · 2023 to 2025
$814k
An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic SequencingK99HG011491 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI SMITH, HADLEY STEVENS · 2021 to 2022
$164k
NHGRI NIH HHS K99 HG011491NHGRI NIH HHS K99HG011491NHGRI NIH HHS R00 HG011491
6 · The paper itself

Abstract

Families of children with rare and undiagnosed conditions face many psychosocial and logistical challenges that may affect their approach to decisions about their child's care and their family's well-being. As genomic sequencing (GS) is increasingly incorporated into pediatric diagnostic workups, assessing the family-level characteristics that shape the experience of pediatric GS is crucial to understanding how families approach decision-making about the test and how they incorporate the results into their family life. We conducted semi-structured interviews with parents and other primary caregivers of pediatric patients who were evaluated for a suspected genetic condition and who were recommended to have GS (

Indexed as

familygenomic sequencingpsychosocialqualitativeutility

Identifiers

PMID37238322
PMCPMC10217651

What OpenQuestion holds

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Registered trials

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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.