Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life Article Swipe
Lauren Kelada
,
Claire E. Wakefield
,
Nada Vidic
,
David 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 Jaffé
·
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.1136/bmjresp-2021-001139
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.1136/bmjresp-2021-001139
Objective 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 (r s =0.68, p=0.014). Satisfaction with information (T1 and T2) and decisional regret (T2) were negatively correlated (T1 r s =−0.71, p=0.01; T2 r s =−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.
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Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1136/bmjresp-2021-001139
- https://bmjopenrespres.bmj.com/content/bmjresp/9/1/e001139.full.pdf
- OA Status
- gold
- Cited By
- 2
- References
- 33
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4213220915
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4213220915Canonical identifier for this work in OpenAlex
- DOI
-
https://doi.org/10.1136/bmjresp-2021-001139Digital Object Identifier
- Title
-
Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of lifeWork title
- Type
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articleOpenAlex work type
- Language
-
enPrimary language
- Publication year
-
2022Year of publication
- Publication date
-
2022-02-01Full publication date if available
- Authors
-
Lauren Kelada, Claire E. Wakefield, Nada Vidic, David 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 JafféList of authors in order
- Landing page
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https://doi.org/10.1136/bmjresp-2021-001139Publisher landing page
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https://bmjopenrespres.bmj.com/content/bmjresp/9/1/e001139.full.pdfDirect link to full text PDF
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-
YesWhether a free full text is available
- OA status
-
goldOpen access status per OpenAlex
- OA URL
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https://bmjopenrespres.bmj.com/content/bmjresp/9/1/e001139.full.pdfDirect OA link when available
- Concepts
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Medicine, Interstitial lung disease, Quality (philosophy), Quality of life (healthcare), Lung disease, Disease, Child health, Lung, Family medicine, Pediatrics, Pathology, Internal medicine, Nursing, Philosophy, EpistemologyTop concepts (fields/topics) attached by OpenAlex
- Cited by
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2Total citation count in OpenAlex
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2023: 2Per-year citation counts (last 5 years)
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33Number of works referenced by this work
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10Other works algorithmically related by OpenAlex
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| corresponding_institution_ids | https://openalex.org/I31746571, https://openalex.org/I4210125633 |
| citation_normalized_percentile.value | 0.71921924 |
| citation_normalized_percentile.is_in_top_1_percent | False |
| citation_normalized_percentile.is_in_top_10_percent | False |