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

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dc.contributor.authorKelada, L.
dc.contributor.authorWakefield, C.
dc.contributor.authorVidic, N.
dc.contributor.authorArmstrong, D.S.
dc.contributor.authorBennetts, B.
dc.contributor.authorBoggs, K.
dc.contributor.authorChristodoulou, J.
dc.contributor.authorHarrison, J.
dc.contributor.authorHo, G.
dc.contributor.authorKapur, N.
dc.contributor.authorLindsey-Temple, S.
dc.contributor.authorMcDonald, T.
dc.contributor.authorMowat, D.
dc.contributor.authorSchultz, A.
dc.contributor.authorSelvadurai, H.
dc.contributor.authorTai, A.
dc.contributor.authorJaffe, A.
dc.date.issued2022
dc.description.abstractObjective Research 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. Methods Parents 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). Results Parents’ (T1, n=19; T2, n=17) HRQoL was lower than population norms. Study satisfaction (T1) and perceived understanding (T2) were positively correlated (rs=0.68, p=0.014). Satisfaction with information (T1 and T2) and decisional regret (T2) were negatively correlated (T1 rs=−0.71, p=0.01; T2 rs=−0.56, p=0.03). Parents reported wanting more frequent communication with staff throughout the genomic sequencing study, and greater information about the confidentiality of test results. Conclusions Understanding 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.
dc.description.statementofresponsibilityLauren Kelada, Claire Wakefield, Nada Vidic, David S Armstrong, Bruce Bennetts, Kirsten Boggs, John Christodoulou, Joanne Harrison, Gladys Ho, Nitin Kapur, Suzanna Lindsey-Temple, Tim McDonald, David Mowat, André Schultz, Hiran Selvadurai, Andrew Tai, Adam Jaffe
dc.identifier.citationBMJ Open Respiratory Research, 2022; 9(1)
dc.identifier.doi10.1136/bmjresp-2021-001139
dc.identifier.issn2052-4439
dc.identifier.issn2052-4439
dc.identifier.orcidTai, A. [0000-0001-9240-5416]
dc.identifier.urihttps://hdl.handle.net/2440/137688
dc.language.isoen
dc.publisherBMJ
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/GNT1113531
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/GNT2000001
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/1143767
dc.rights© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
dc.source.urihttps://doi.org/10.1136/bmjresp-2021-001139
dc.subjectHumans
dc.subjectLung Diseases
dc.subjectPersonal Satisfaction
dc.subjectParents
dc.subjectQuality of Life
dc.subjectChild
dc.subjectGenetic Testing
dc.subject.meshHumans
dc.subject.meshLung Diseases
dc.subject.meshPersonal Satisfaction
dc.subject.meshParents
dc.subject.meshQuality of Life
dc.subject.meshChild
dc.subject.meshGenetic Testing
dc.titleGenomic testing for children with interstitial and diffuse lung disease (chILD): Parent satisfaction, understanding and health-related quality of life
dc.typeJournal article
pubs.publication-statusPublished

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