DECIDE: a Decision Support Tool to Facilitate Parents' Choices Regarding Genome-Wide Sequencing.
We describe the rationale, development, and usability testing for an integrated e-learning tool and decision aid for parents facing decisions about genome-wide sequencing (GWS) for their children with a suspected genetic condition. The online tool, DECIDE, is designed to provide decision-support and...
| Publicado en: | Journal of Genetic Counseling Vol. 25; no. 6; pp. 1298 - 1309 |
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| Autores principales: | , , , , , , , |
| Formato: | pictorial research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Dec2016
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=119538873&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 119538873 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Dec2016 vid: 25 iid: 6 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 119538873 119538873 119538873 10.1007/s10897-016-9971-8 119538873 ppf: 1298 ppct: 11 formats: fmt: @attributes: type: P tig: atl: DECIDE: a Decision Support Tool to Facilitate Parents' Choices Regarding Genome-Wide Sequencing. aug: au: Birch, Patricia Adam, S. Bansback, N. Coe, R. Hicklin, J. Lehman, A. Li, K. Friedman, J. affil: Department of Medical Genetics, Children's and Women's Hospital , University of British Columbia , 4500 Oak Street Vancouver V6H 3N1 Canada sug: subj: Hereditary Diseases Diagnosis Genomics Sequence Analysis Parental Attitudes Decision Making, Clinical Evaluation Instrument Validation Human Clinical Assessment Tools Education, Non-Traditional Computer-Assisted Instruction Decision Support Techniques Usability Study ab: We describe the rationale, development, and usability testing for an integrated e-learning tool and decision aid for parents facing decisions about genome-wide sequencing (GWS) for their children with a suspected genetic condition. The online tool, DECIDE, is designed to provide decision-support and to promote high quality decisions about undergoing GWS with or without return of optional incidental finding results. DECIDE works by integrating educational material with decision aids. Users may tailor their learning by controlling both the amount of information and its format - text and diagrams and/or short videos. The decision aid guides users to weigh the importance of various relevant factors in their own lives and circumstances. After considering the pros and cons of GWS and return of incidental findings, DECIDE summarizes the user's responses and apparent preferred choices. In a usability study of 16 parents who had already chosen GWS after conventional genetic counselling, all participants found DECIDE to be helpful. Many would have been satisfied to use it alone to guide their GWS decisions, but most would prefer to have the option of consulting a health care professional as well to aid their decision. Further testing is necessary to establish the effectiveness of using DECIDE as an adjunct to or instead of conventional pre-test genetic counselling for clinical genome-wide sequencing. pubtype: Academic Journal doctype: pictorial research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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