The Genomics ADvISER: development and usability testing of a decision aid for the selection of incidental sequencing results
Guidelines recommend patients be informed of their incidental results (IR) when undergoing genomic sequencing (GS), yet there are limited tools to support patients' decisions about learning IR. The aim of this study is to develop and test the usability of a decision aid (DA) to guide patients&#...
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| Veröffentlicht in: | European journal of human genetics : EJHG 2018-07, Vol.26 (7), p.984-995 |
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| creator | Bombard, Yvonne Clausen, Marc Mighton, Chloe Carlsson, Lindsay Casalino, Selina Glogowski, Emily Schrader, Kasmintan Evans, Michael Scheer, Adena Baxter, Nancy Hamilton, Jada G Lerner-Ellis, Jordan Offit, Kenneth Robson, Mark Laupacis, Andreas |
| description | Guidelines recommend patients be informed of their incidental results (IR) when undergoing genomic sequencing (GS), yet there are limited tools to support patients' decisions about learning IR. The aim of this study is to develop and test the usability of a decision aid (DA) to guide patients' selection of IR, and to describe patients' preferences for learning IR following use of the DA. We developed and evaluated a DA using an iterative, mixed-methods process consisting of (1) prototype development, (2) feasibility testing, (3) cognitive interviews, (4) design and programming, and (5) usability testing. We created an interactive online DA called the Genomics ADvISER, a genomics decision AiD about Incidental SEquencing Results. The Genomics ADvISER begins with an educational whiteboard video, and then engages users in a values clarification exercise, knowledge quiz and final choice step, based on a 'binning' framework. Participants found the DA acceptable and intuitive to use. They were enthusiastic towards GS and IR; all selected multiple categories of IR. The Genomics ADvISER is a new patient-centered tool to support the clinical delivery of incidental GS results. The Genomics ADvISER fills critical care gaps, given the health care system's limited genomics expertise and capacity to convey the large volume of IR and their myriad of implications. |
| doi_str_mv | 10.1038/s41431-018-0144-0 |
| format | Article |
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The aim of this study is to develop and test the usability of a decision aid (DA) to guide patients' selection of IR, and to describe patients' preferences for learning IR following use of the DA. We developed and evaluated a DA using an iterative, mixed-methods process consisting of (1) prototype development, (2) feasibility testing, (3) cognitive interviews, (4) design and programming, and (5) usability testing. We created an interactive online DA called the Genomics ADvISER, a genomics decision AiD about Incidental SEquencing Results. The Genomics ADvISER begins with an educational whiteboard video, and then engages users in a values clarification exercise, knowledge quiz and final choice step, based on a 'binning' framework. Participants found the DA acceptable and intuitive to use. They were enthusiastic towards GS and IR; all selected multiple categories of IR. The Genomics ADvISER is a new patient-centered tool to support the clinical delivery of incidental GS results. The Genomics ADvISER fills critical care gaps, given the health care system's limited genomics expertise and capacity to convey the large volume of IR and their myriad of implications.</description><identifier>ISSN: 1018-4813</identifier><identifier>EISSN: 1476-5438</identifier><identifier>DOI: 10.1038/s41431-018-0144-0</identifier><identifier>PMID: 29703952</identifier><language>eng</language><publisher>England: Nature Publishing Group</publisher><subject>Cognitive ability ; Decision Making ; Decision Support Techniques ; Genomics ; Genomics - trends ; Humans ; Patient Preference ; Software ; Usability testing ; User-Computer Interface</subject><ispartof>European journal of human genetics : EJHG, 2018-07, Vol.26 (7), p.984-995</ispartof><rights>Copyright Nature Publishing Group Jul 2018</rights><rights>European Society of Human Genetics 2018</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c427t-367cef47625e66abe31f9eb3ab216bb97140d2969a4bfeec5caeaac5aebe3bce3</citedby><cites>FETCH-LOGICAL-c427t-367cef47625e66abe31f9eb3ab216bb97140d2969a4bfeec5caeaac5aebe3bce3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6018661/pdf/$$EPDF$$P50$$Gpubmedcentral$$H</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6018661/$$EHTML$$P50$$Gpubmedcentral$$H</linktohtml><link.rule.ids>230,315,728,781,785,886,27929,27930,53796,53798</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29703952$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Bombard, Yvonne</creatorcontrib><creatorcontrib>Clausen, Marc</creatorcontrib><creatorcontrib>Mighton, Chloe</creatorcontrib><creatorcontrib>Carlsson, Lindsay</creatorcontrib><creatorcontrib>Casalino, Selina</creatorcontrib><creatorcontrib>Glogowski, Emily</creatorcontrib><creatorcontrib>Schrader, Kasmintan</creatorcontrib><creatorcontrib>Evans, Michael</creatorcontrib><creatorcontrib>Scheer, Adena</creatorcontrib><creatorcontrib>Baxter, Nancy</creatorcontrib><creatorcontrib>Hamilton, Jada G</creatorcontrib><creatorcontrib>Lerner-Ellis, Jordan</creatorcontrib><creatorcontrib>Offit, Kenneth</creatorcontrib><creatorcontrib>Robson, Mark</creatorcontrib><creatorcontrib>Laupacis, Andreas</creatorcontrib><title>The Genomics ADvISER: development and usability testing of a decision aid for the selection of incidental sequencing results</title><title>European journal of human genetics : EJHG</title><addtitle>Eur J Hum Genet</addtitle><description>Guidelines recommend patients be informed of their incidental results (IR) when undergoing genomic sequencing (GS), yet there are limited tools to support patients' decisions about learning IR. The aim of this study is to develop and test the usability of a decision aid (DA) to guide patients' selection of IR, and to describe patients' preferences for learning IR following use of the DA. We developed and evaluated a DA using an iterative, mixed-methods process consisting of (1) prototype development, (2) feasibility testing, (3) cognitive interviews, (4) design and programming, and (5) usability testing. We created an interactive online DA called the Genomics ADvISER, a genomics decision AiD about Incidental SEquencing Results. The Genomics ADvISER begins with an educational whiteboard video, and then engages users in a values clarification exercise, knowledge quiz and final choice step, based on a 'binning' framework. Participants found the DA acceptable and intuitive to use. They were enthusiastic towards GS and IR; all selected multiple categories of IR. The Genomics ADvISER is a new patient-centered tool to support the clinical delivery of incidental GS results. The Genomics ADvISER fills critical care gaps, given the health care system's limited genomics expertise and capacity to convey the large volume of IR and their myriad of implications.</description><subject>Cognitive ability</subject><subject>Decision Making</subject><subject>Decision Support Techniques</subject><subject>Genomics</subject><subject>Genomics - trends</subject><subject>Humans</subject><subject>Patient Preference</subject><subject>Software</subject><subject>Usability testing</subject><subject>User-Computer Interface</subject><issn>1018-4813</issn><issn>1476-5438</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNpdkU9rFTEUxYMo9o9-ADcScNPNaDLJZN64EEpta6EgaF2HJHOnTckkzyTzoOCH9w6vFnURktz87uGeHELecPaeM7H5UCSXgjeMb3BJ2bBn5JDLXjWdFJvneF5f5IaLA3JUyj1DqO_5S3LQDj0TQ9cekl83d0AvIabZu0JPP--uvp9_-0hH2EFI2xlipSaOdCnG-uDrA61Qqo-3NE3UIOZ88SlS40c6pUwrqhUI4OpaRcZH50dUMQHrPxfAKzZnKEuo5RV5MZlQ4PXjfkx-XJzfnH1prr9eXp2dXjdOtn1thOodTOir7UApY0HwaQArjG25snbouWRjO6jBSDsBuM4ZMMZ1BhC1DsQx-bTX3S52htHhPNkEvc1-NvlBJ-P1vy_R3-nbtNMKP1ApjgInjwI5oYlS9eyLgxBMhLQU3TLRSobTSETf_YfepyVHtIdUN3RCKMWQ4nvK5VRKhulpGM70mq3eZ6txAL1mq9eet3-7eOr4E6b4DQAiotY</recordid><startdate>20180701</startdate><enddate>20180701</enddate><creator>Bombard, Yvonne</creator><creator>Clausen, Marc</creator><creator>Mighton, Chloe</creator><creator>Carlsson, Lindsay</creator><creator>Casalino, Selina</creator><creator>Glogowski, Emily</creator><creator>Schrader, Kasmintan</creator><creator>Evans, Michael</creator><creator>Scheer, Adena</creator><creator>Baxter, Nancy</creator><creator>Hamilton, Jada G</creator><creator>Lerner-Ellis, Jordan</creator><creator>Offit, Kenneth</creator><creator>Robson, Mark</creator><creator>Laupacis, Andreas</creator><general>Nature Publishing Group</general><general>Springer International Publishing</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88A</scope><scope>88E</scope><scope>8AO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M7P</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20180701</creationdate><title>The Genomics ADvISER: development and usability testing of a decision aid for the selection of incidental sequencing results</title><author>Bombard, Yvonne ; Clausen, Marc ; Mighton, Chloe ; Carlsson, Lindsay ; Casalino, Selina ; Glogowski, Emily ; Schrader, Kasmintan ; Evans, Michael ; Scheer, Adena ; Baxter, Nancy ; Hamilton, Jada G ; Lerner-Ellis, Jordan ; Offit, Kenneth ; Robson, Mark ; Laupacis, Andreas</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c427t-367cef47625e66abe31f9eb3ab216bb97140d2969a4bfeec5caeaac5aebe3bce3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Cognitive ability</topic><topic>Decision Making</topic><topic>Decision Support Techniques</topic><topic>Genomics</topic><topic>Genomics - 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Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>European journal of human genetics : EJHG</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Bombard, Yvonne</au><au>Clausen, Marc</au><au>Mighton, Chloe</au><au>Carlsson, Lindsay</au><au>Casalino, Selina</au><au>Glogowski, Emily</au><au>Schrader, Kasmintan</au><au>Evans, Michael</au><au>Scheer, Adena</au><au>Baxter, Nancy</au><au>Hamilton, Jada G</au><au>Lerner-Ellis, Jordan</au><au>Offit, Kenneth</au><au>Robson, Mark</au><au>Laupacis, Andreas</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The Genomics ADvISER: development and usability testing of a decision aid for the selection of incidental sequencing results</atitle><jtitle>European journal of human genetics : EJHG</jtitle><addtitle>Eur J Hum Genet</addtitle><date>2018-07-01</date><risdate>2018</risdate><volume>26</volume><issue>7</issue><spage>984</spage><epage>995</epage><pages>984-995</pages><issn>1018-4813</issn><eissn>1476-5438</eissn><abstract>Guidelines recommend patients be informed of their incidental results (IR) when undergoing genomic sequencing (GS), yet there are limited tools to support patients' decisions about learning IR. 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| source | MEDLINE; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central; Alma/SFX Local Collection |
| subjects | Cognitive ability Decision Making Decision Support Techniques Genomics Genomics - trends Humans Patient Preference Software Usability testing User-Computer Interface |
| title | The Genomics ADvISER: development and usability testing of a decision aid for the selection of incidental sequencing results |
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