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dc.contributor.authorFarmer, George D
dc.contributor.authorGray, Harry
dc.contributor.authorChandratillake, Gemma
dc.contributor.authorRaymond, F Lucy
dc.contributor.authorFreeman, Alexandra LJ
dc.date.accessioned2021-02-04T16:25:23Z
dc.date.available2021-02-04T16:25:23Z
dc.date.issued2020-07
dc.date.submitted2019-09-13
dc.identifier.issn1018-4813
dc.identifier.others41431-020-0579-y
dc.identifier.other579
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/317159
dc.descriptionFunder: David and Claudia Harding Foundation
dc.description.abstractPatients and non-specialist healthcare professionals are increasingly expected to understand and interpret the results of genetic or genomic testing. These results are currently reported using a variety of templates, containing different amounts, levels, and layouts of information. We set out to establish a set of recommendations for communicating genetic test results to non-expert readers. We employed a qualitative-descriptive study design with user-centred design principles, including a mixture of in-person semi-structured interviews and online questionnaires with patients, healthcare professionals and the general public. The resulting recommendations and example template include providing at-a-glance comprehension of what the test results mean for the patient; suggested next steps; and details of further information and support. Separation and inclusion of technical methodological details enhances non-specialists' understanding, while retaining important information for specialists and the patients' records. The recommendations address the high-level needs of patients and their non-specialist clinicians when receiving genetic test results. These recommendations provide a solid foundation for the major content and structure of reports, and we recommend further engagement with patients and clinicians to tailor reports to specific types of test and results.
dc.languageen
dc.publisherSpringer Science and Business Media LLC
dc.rightsAttribution 4.0 International (CC BY 4.0)
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subjectArticle
dc.subject/692/700/1719
dc.subject/706/689/477/2811
dc.subjectarticle
dc.titleRecommendations for designing genetic test reports to be understood by patients and non-specialists.
dc.typeArticle
dc.date.updated2021-02-04T16:25:22Z
prism.endingPage895
prism.issueIdentifier7
prism.publicationNameEur J Hum Genet
prism.startingPage885
prism.volume28
dc.identifier.doi10.17863/CAM.64270
dcterms.dateAccepted2020-01-22
rioxxterms.versionofrecord10.1038/s41431-020-0579-y
rioxxterms.versionVoR
rioxxterms.licenseref.urihttp://creativecommons.org/licenses/by/4.0/
dc.contributor.orcidFarmer, George D [0000-0003-2882-0310]
dc.contributor.orcidGray, Harry [0000-0002-6714-0089]
dc.contributor.orcidFreeman, Alexandra LJ [0000-0002-4115-161X]
dc.identifier.eissn1476-5438
pubs.funder-project-idWellcome Trust (Wellcome) (105362/Z/14/Z)
cam.issuedOnline2020-02-05


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Attribution 4.0 International (CC BY 4.0)
Except where otherwise noted, this item's licence is described as Attribution 4.0 International (CC BY 4.0)