Evidence map›Paper›PMID 35190460›Full record

ArticleBMJ open respiratory research2022

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life.

Lauren Kelada, Claire Wakefield, Nada Vidic, David S Armstrong, Bruce Bennetts, Kirsten Boggs, John Christodoulou, Joanne Harrison, Gladys Ho, Nitin Kapur and 7 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open respiratory research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.8field-weighted citation impact, top 28% 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

1 citing paper in PubMed, 2 citations in OpenAlex.

  1. Diagnostic workup of childhood interstitial lung disease.European respiratory review : an official journal of the European Respiratory Society · 2023
    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

17 authors at 10 institutions in 1 country.

Lauren KeladaBehavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital Randwick, Randwick, New South Wales, Australia l.kelada@unsw.edu.au.ORCID 0000-0001-9428-8807
Claire WakefieldBehavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital Randwick, Randwick, New South Wales, Australia.
Nada VidicSchool of Clinical Medicine, UNSW Medicine & Health, UNSW, Sydney, New South Wales, Australia.
David S ArmstrongDepartment of Respiratory Medicine, Monash Children's Hospital, Melbourne, Victoria, Australia.ORCID 0000-0002-5933-705X
Bruce BennettsDiscipline of Genetic Medicine and Discipline of Child & Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Kirsten BoggsDepartment of Clinical Genetics, Sydney Children's Hospital Network, Westmead, New South Wales, Australia.
John ChristodoulouDiscipline of Genetic Medicine and Discipline of Child & Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Joanne HarrisonDepartment of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
Gladys HoDiscipline of Genetic Medicine and Discipline of Child & Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Nitin KapurDepartment of Respiratory and Sleep Medicine, Queensland Children's Hospital, South Brisbane, Queensland, Australia.
Suzanna Lindsey-TempleSchool of Clinical Medicine, UNSW Medicine & Health, UNSW, Sydney, New South Wales, Australia.
Tim McDonaldPaediatrics, Canberra Hospital, Canberra, Australian Capital Territory, Australia.
David MowatSchool of Clinical Medicine, UNSW Medicine & Health, UNSW, Sydney, New South Wales, Australia.
André SchultzDepartment of Respiratory and Sleep Medicine, Perth Children's Hospital, Perth, Western Australia, Australia.
Hiran SelvaduraiDepartment of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Andrew TaiRespiratory and Sleep Medicine, Women's and Children's Hospital Adelaide, North Adelaide, South Australia, Australia.
Adam JaffeSchool of Clinical Medicine, UNSW Medicine & Health, UNSW, Sydney, New South Wales, Australia.
UNSW Sydney · AUThe University of Sydney · AUCanberra Hospital · AULiverpool Hospital · AUMission Australia · AUMonash Children’s Hospital · AURoyal Children's Hospital · AUThe Kids Research Institute Australia · AUThe University of Queensland · AUWomen's and Children's Hospital · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveResearch is needed to determine best practice for genomic testing in the context of child interstitial or diffuse lung disease (chILD). We explored parent's and child's health-related quality of life (HRQoL), parents' perceived understanding of a genomic testing study, satisfaction with information and the study and decisional regret to undertake genomic testing.

methodsParents of children with diagnosed or suspected chILD who were enrolled in a genomic sequencing study were invited to complete questionnaires pretesting (T1) and after receiving the result (T2).

resultsParents' (T1, n=19; T2, n=17) HRQoL was lower than population norms. Study satisfaction (T1) and perceived understanding (T2) were positively correlated (r

conclusionsUnderstanding of genomic testing, satisfaction with information and participation and decisional regret are inter-related. Pretest consultations are important and can allow researchers to explain confidentiality of data and the variable turnaround times for receiving a test result. Staff can also update parents when there will be delays to receiving a result.

Indexed as

Lung DiseasesQuality of LifeChildGenetic TestingHumansParentsPersonal Satisfactionpaediatric lung disaeserare lung diseases

Identifiers

PMID35190460
PMCPMC8862491
OpenAlexW4213220915

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.