Evidence map›Paper›PMID 34255550›Full record

Trial reportCirculation. Genomic and precision medicine2021

Impact of Genetic Testing for Cardiomyopathy on Emotional Well-Being and Family Dynamics: A Study of Parents and Adolescents.

Priyanka Ahimaz, Maya Sabatello, Min Qian, Aijin Wang, Erin M Miller, Ashley Parrott, Ashwin K Lal, Kathryn C Chatfield, Joseph W Rossano, Stephanie M Ware and 8 more

Open access · bronzeAbstract readClinical TrialMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Circulation. Genomic and precision medicine, 2021. 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
0.3field-weighted citation impact, top 40% 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

3 citing papers in PubMed, 7 citations in OpenAlex.

  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

18 authors at 10 institutions in 4 countries.

Priyanka AhimazDivision of Molecular Genetics, Department of Pediatrics (P.A., J.W., W.K.C.), Columbia University Irving Medical Center.
Maya SabatelloCenter for Precision Medicine and Genomics, Division of Ethics, Departments of Medicine, Medical Humanities and Ethics (M.S.).
Min QianDepartment of Biostatistics, Mailman School of Public Health (M.Q., A.W.).
Aijin WangDepartment of Biostatistics, Mailman School of Public Health (M.Q., A.W.).
Erin M MillerDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati Children's Hospital Medical Center, Heart Institute Cincinnati, OH (E.M.M.).
Ashley ParrottThe Heart Institute, Cincinnati Children's Hospital Medical Center, OH (A.P.).
Ashwin K LalPrimary Children's Hospital, University of Utah, Salt Lake City (A.K.L.).
Kathryn C ChatfieldDepartment of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora (K.C.C.).
Joseph W RossanoChildren's Hospital of Philadelphia, PA (J.W.R.).
Stephanie M WareDepartments of Pediatrics and Medical and Molecular Genetics (S.M.W.), Indiana University School of Medicine, Indianapolis.
John J ParentDepartment of Pediatrics (J.J.P.), Indiana University School of Medicine, Indianapolis.
Paul KantorStollery Children's Hospital, Edmonton, Alberta, Canada (P.K.).
Lisa YueChildren's Cardiomyopathy Foundation (L.Y.), Columbia University Irving Medical Center.
Julia WynnDivision of Molecular Genetics, Department of Pediatrics (P.A., J.W., W.K.C.), Columbia University Irving Medical Center.
Teresa M LeeDivision of Cardiology, Department of Pediatrics (T.M.L., L.J.A.), Columbia University Irving Medical Center.
Linda J AddonizioDivision of Cardiology, Department of Pediatrics (T.M.L., L.J.A.), Columbia University Irving Medical Center.
Paul S AppelbaumCenter for Research on Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral Genetics, Department of Psychiatry, Columbia University, New York, NY (P.S.A.).
Wendy K ChungDivision of Molecular Genetics, Department of Pediatrics (P.A., J.W., W.K.C.), Columbia University Irving Medical Center.
Columbia University Irving Medical Center · USCincinnati Children's Hospital Medical Center · USIndiana University – Purdue University Indianapolis · USCal Humanities · USLoma Linda University Medical Center · USNew York Psychoanalytic Society and Institute · USPrimary Children's Hospital · USSt. Joseph Hospital · USStollery Children's Hospital · CAUniversity of Colorado Anschutz Medical Campus · US

Funding

Yale Clinical and Translational Science Award (U Component)UL1TR001863 · NCATS · YALE UNIVERSITY · PI John H. Krystal, LUCILA OHNO-MACHADO · 2016 to 2026
$102.9M
Genotype-Phenotype Associations in Pediatric CardiomyopathyR01HL111459 · NHLBI · WAYNE STATE UNIVERSITY · PI LIPSHULTZ, STEVEN EDWARD · 2012 to 2015
$8.6M
Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral GeneticsRM1HG007257 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI APPELBAUM, PAUL STUART · 2018 to 2021
$4.4M
Development of recommendations and policies for genetic variant reclassificationR01HG010365 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI APPELBAUM, PAUL STUART, CHUNG, WENDY K · 2018 to 2021
$2.9M
Impact of Psychiatric Genetic Data on Civil Litigation and its Relationship with StigmaK01HG008653 · NHGRI · NEW YORK STATE PSYCHIATRIC INSTITUTE DBA RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC · PI SABATELLO, MAYA · 2015 to 2019
$871k
Identification and functional analysis of novel infantile cardiomyopathy genesK23HL138231 · NHLBI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI LEE, TERESA M · 2017 to 2020
$738k
NCATS NIH HHS UL1 TR001863NHGRI NIH HHS K01 HG008653NHGRI NIH HHS R01 HG010365NHGRI NIH HHS RM1 HG007257NHLBI NIH HHS K23 HL138231NHLBI NIH HHS R01 HL111459
6 · The paper itself

Abstract

backgroundGenetic testing is indicated for children with a personal or family history of hereditary cardiomyopathy to determine appropriate management and inform risk stratification for family members. The implications of a positive genetic result for children can potentially impact emotional well-being. Given the nuances of cardiomyopathy genetic testing for minors, this study aimed to understand how parents involve their children in the testing process and investigate the impact of genetic results on family dynamics.

methodsA survey was distributed to participants recruited from the Children's Cardiomyopathy Foundation and 7 North American sites in the Pediatric Cardiomyopathy Registry. The survey explored adolescent and parent participants' emotions upon receiving their/their child's genetic results, parent-child result communication and its impact on family functionality, using the McMaster Family Assessment Device.

resultsOne hundred sixty-two parents of minors and 48 adolescents who were offered genetic testing for a personal or family history of cardiomyopathy completed the survey. Parents whose child had cardiomyopathy were more likely to disclose positive diagnostic genetic results to their child (

conclusionsThese findings have important considerations for how providers structure genetic services for adolescents and facilitate discussion between parents and their children about results.

Indexed as

EmotionsGenetic TestingParentsSurveys and QuestionnairesAdolescentCardiomyopathiesChildFemaleHumansMalebehaviorcardiomyopathiesfamilygenetic testingpsychology

Identifiers

PMID34255550
PMCPMC8373687
OpenAlexW3181148076

What OpenQuestion holds

Textmetadata
LicenceTDM
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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.