Assessing an Interactive Online Tool to Support Parents’ Genomic Testing Decisions View Full Text


Ontology type: schema:ScholarlyArticle     


Article Info

DATE

2018-07-23

AUTHORS

Shelin Adam, Patricia H. Birch, Rachel R. Coe, Nick Bansback, Adrian L. Jones, Mary B. Connolly, Michelle K. Demos, Eric B. Toyota, Matthew J. Farrer, Jan M. Friedman

ABSTRACT

Clinical use of genome-wide sequencing (GWS) requires pre-test genetic counseling, but the availability of genetic counseling is limited. We developed an interactive online decision-support tool, DECIDE, to make genetic counseling, patient education, and decision support more readily available. We performed a non-inferiority trial comparing DECIDE to standard genetic counseling to assess the clinical value of DECIDE for pre-GWS counseling. One hundred and six parents considering GWS for their children with epilepsy were randomized to conventional genetic counseling or DECIDE. Following the intervention, we measured parents' knowledge and empowerment and asked their opinions about using DECIDE. Both DECIDE and conventional genetic counseling significantly increased parents' knowledge, with no difference between groups. Empowerment also increased but by less than 2% in each group. Parents liked using DECIDE and found it useful; 81% would recommend it to others; 49% wished to use it along with a genetic counselor; 26% of parents preferred to see a genetic counselor; 7% preferred DECIDE alone; and 18% had no preference. DECIDE appears equivalent to genetic counseling at conveying information. In addition, it was highly acceptable to the majority of study participants, many of whom indicated that it was useful to their decision-making. Use of DECIDE as a pre-test tool may extend genetic counseling resources. More... »

PAGES

1-8

References to SciGraph publications

Identifiers

URI

http://scigraph.springernature.com/pub.10.1007/s10897-018-0281-1

DOI

http://dx.doi.org/10.1007/s10897-018-0281-1

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1105766530

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/30033481


Indexing Status Check whether this publication has been indexed by Scopus and Web Of Science using the SN Indexing Status Tool
Incoming Citations Browse incoming citations for this publication using opencitations.net

JSON-LD is the canonical representation for SciGraph data.

TIP: You can open this SciGraph record using an external JSON-LD service: JSON-LD Playground Google SDTT

[
  {
    "@context": "https://springernature.github.io/scigraph/jsonld/sgcontext.json", 
    "about": [
      {
        "id": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/1117", 
        "inDefinedTermSet": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/", 
        "name": "Public Health and Health Services", 
        "type": "DefinedTerm"
      }, 
      {
        "id": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/11", 
        "inDefinedTermSet": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/", 
        "name": "Medical and Health Sciences", 
        "type": "DefinedTerm"
      }
    ], 
    "author": [
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Medical Genetics, University of British Columbia, 4500 Oak Street, Box 153, V6H 3N1, Vancouver, BC, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Adam", 
        "givenName": "Shelin", 
        "id": "sg:person.0600660015.31", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0600660015.31"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Medical Genetics, University of British Columbia, 4500 Oak Street, Box 153, V6H 3N1, Vancouver, BC, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Birch", 
        "givenName": "Patricia H.", 
        "id": "sg:person.01312244442.86", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01312244442.86"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Medical Genetics, University of British Columbia, 4500 Oak Street, Box 153, V6H 3N1, Vancouver, BC, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Coe", 
        "givenName": "Rachel R.", 
        "id": "sg:person.07753720351.90", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07753720351.90"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "School of Population and Public Health, University of British Columbia, Vancouver, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Bansback", 
        "givenName": "Nick", 
        "id": "sg:person.07447143677.16", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07447143677.16"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Statistics, University of British Columbia, Vancouver, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Jones", 
        "givenName": "Adrian L.", 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Neurology, University of British Columbia, Vancouver, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Connolly", 
        "givenName": "Mary B.", 
        "id": "sg:person.01203616666.42", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01203616666.42"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Neurology, University of British Columbia, Vancouver, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Demos", 
        "givenName": "Michelle K.", 
        "id": "sg:person.01040766554.44", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01040766554.44"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Neurology, University of British Columbia, Vancouver, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Toyota", 
        "givenName": "Eric B.", 
        "id": "sg:person.010511313567.10", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.010511313567.10"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Centre for Applied Neurogenetics (CAN), Djavad Mowafaghian Centre, Department of Medical Genetics, University of British Columbia, Vancouver, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Farrer", 
        "givenName": "Matthew J.", 
        "id": "sg:person.010336264024.79", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.010336264024.79"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of British Columbia", 
          "id": "https://www.grid.ac/institutes/grid.17091.3e", 
          "name": [
            "Department of Medical Genetics, University of British Columbia, 4500 Oak Street, Box 153, V6H 3N1, Vancouver, BC, Canada"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Friedman", 
        "givenName": "Jan M.", 
        "id": "sg:person.012432656042.24", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.012432656042.24"
        ], 
        "type": "Person"
      }
    ], 
    "citation": [
      {
        "id": "https://doi.org/10.1016/j.pec.2011.11.006", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1000493529"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1002/cncr.23681", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1005330211"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1136/bmj.323.7321.1123", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1005732758"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1136/jmedgenet-2015-103144", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1008349559"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s10897-016-9971-8", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1010190835", 
          "https://doi.org/10.1007/s10897-016-9971-8"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2012.84", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1010627711", 
          "https://doi.org/10.1038/gim.2012.84"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1001/jamapediatrics.2014.2341", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1010938166"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s13187-010-0183-x", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1013259626", 
          "https://doi.org/10.1007/s13187-010-0183-x"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s13187-010-0183-x", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1013259626", 
          "https://doi.org/10.1007/s13187-010-0183-x"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1542/peds.2015-3731e", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1015579118"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2013.73", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1017226766", 
          "https://doi.org/10.1038/gim.2013.73"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2016.170", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1018772596", 
          "https://doi.org/10.1038/gim.2016.170"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1111/j.1399-0004.2011.01636.x", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1019028078"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2016.133", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1019863058", 
          "https://doi.org/10.1038/gim.2016.133"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1056/nejmp1215536", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1021331693"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1002/pd.4347", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1021339394"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1111/cge.12415", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1024336286"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1097/aog.0b013e31818e7ec4", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1025277647"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1097/aog.0b013e31818e7ec4", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1025277647"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1016/s0738-3991(02)00089-7", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1026968089"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1186/1472-6947-13-s2-s2", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1027688597", 
          "https://doi.org/10.1186/1472-6947-13-s2-s2"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1177/0272989x03256005", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1027742407"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1177/0272989x03256005", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1027742407"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1186/1472-6947-14-62", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1028075726", 
          "https://doi.org/10.1186/1472-6947-14-62"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2016.91", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1034574046", 
          "https://doi.org/10.1038/gim.2016.91"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2016.17", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1042777605", 
          "https://doi.org/10.1038/gim.2016.17"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1111/cge.12520", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1043535219"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.2196/jmir.4982", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1044036202"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1186/gm353", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1045446395", 
          "https://doi.org/10.1186/gm353"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/ejhg.2010.160", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1049624982", 
          "https://doi.org/10.1038/ejhg.2010.160"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s10897-015-9868-y", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1049690710", 
          "https://doi.org/10.1007/s10897-015-9868-y"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s10897-016-0044-9", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1050975399", 
          "https://doi.org/10.1007/s10897-016-0044-9"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s10897-016-0044-9", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1050975399", 
          "https://doi.org/10.1007/s10897-016-0044-9"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1080/15265161.2016.1251632", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1058399547"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1126/science.1220967", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1062466596"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1126/science.caredit.a1600094", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1062670988"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1002/14651858.cd001431.pub5", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1084781396"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.2196/medinform.6405", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1092117103"
        ], 
        "type": "CreativeWork"
      }
    ], 
    "datePublished": "2018-07-23", 
    "datePublishedReg": "2018-07-23", 
    "description": "Clinical use of genome-wide sequencing (GWS) requires pre-test genetic counseling, but the availability of genetic counseling is limited. We developed an interactive online decision-support tool, DECIDE, to make genetic counseling, patient education, and decision support more readily available. We performed a non-inferiority trial comparing DECIDE to standard genetic counseling to assess the clinical value of DECIDE for pre-GWS counseling. One hundred and six parents considering GWS for their children with epilepsy were randomized to conventional genetic counseling or DECIDE. Following the intervention, we measured parents' knowledge and empowerment and asked their opinions about using DECIDE. Both DECIDE and conventional genetic counseling significantly increased parents' knowledge, with no difference between groups. Empowerment also increased but by less than 2% in each group. Parents liked using DECIDE and found it useful; 81% would recommend it to others; 49% wished to use it along with a genetic counselor; 26% of parents preferred to see a genetic counselor; 7% preferred DECIDE alone; and 18% had no preference. DECIDE appears equivalent to genetic counseling at conveying information. In addition, it was highly acceptable to the majority of study participants, many of whom indicated that it was useful to their decision-making. Use of DECIDE as a pre-test tool may extend genetic counseling resources.", 
    "genre": "research_article", 
    "id": "sg:pub.10.1007/s10897-018-0281-1", 
    "inLanguage": [
      "en"
    ], 
    "isAccessibleForFree": false, 
    "isPartOf": [
      {
        "id": "sg:journal.1102286", 
        "issn": [
          "1059-7700", 
          "1573-3599"
        ], 
        "name": "Journal of Genetic Counseling", 
        "type": "Periodical"
      }
    ], 
    "name": "Assessing an Interactive Online Tool to Support Parents\u2019 Genomic Testing Decisions", 
    "pagination": "1-8", 
    "productId": [
      {
        "name": "readcube_id", 
        "type": "PropertyValue", 
        "value": [
          "6ce2457f558b5685a7dded9702be6c33caae94c91aa808039388fc93ec97cc00"
        ]
      }, 
      {
        "name": "pubmed_id", 
        "type": "PropertyValue", 
        "value": [
          "30033481"
        ]
      }, 
      {
        "name": "nlm_unique_id", 
        "type": "PropertyValue", 
        "value": [
          "9206865"
        ]
      }, 
      {
        "name": "doi", 
        "type": "PropertyValue", 
        "value": [
          "10.1007/s10897-018-0281-1"
        ]
      }, 
      {
        "name": "dimensions_id", 
        "type": "PropertyValue", 
        "value": [
          "pub.1105766530"
        ]
      }
    ], 
    "sameAs": [
      "https://doi.org/10.1007/s10897-018-0281-1", 
      "https://app.dimensions.ai/details/publication/pub.1105766530"
    ], 
    "sdDataset": "articles", 
    "sdDatePublished": "2019-04-10T20:05", 
    "sdLicense": "https://scigraph.springernature.com/explorer/license/", 
    "sdPublisher": {
      "name": "Springer Nature - SN SciGraph project", 
      "type": "Organization"
    }, 
    "sdSource": "s3://com-uberresearch-data-dimensions-target-20181106-alternative/cleanup/v134/2549eaecd7973599484d7c17b260dba0a4ecb94b/merge/v9/a6c9fde33151104705d4d7ff012ea9563521a3ce/jats-lookup/v90/0000000001_0000000264/records_8681_00000557.jsonl", 
    "type": "ScholarlyArticle", 
    "url": "https://link.springer.com/10.1007%2Fs10897-018-0281-1"
  }
]
 

Download the RDF metadata as:  json-ld nt turtle xml License info

HOW TO GET THIS DATA PROGRAMMATICALLY:

JSON-LD is a popular format for linked data which is fully compatible with JSON.

curl -H 'Accept: application/ld+json' 'https://scigraph.springernature.com/pub.10.1007/s10897-018-0281-1'

N-Triples is a line-based linked data format ideal for batch operations.

curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1007/s10897-018-0281-1'

Turtle is a human-readable linked data format.

curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1007/s10897-018-0281-1'

RDF/XML is a standard XML format for linked data.

curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1007/s10897-018-0281-1'


 

This table displays all metadata directly associated to this object as RDF triples.

245 TRIPLES      21 PREDICATES      60 URIs      18 LITERALS      7 BLANK NODES

Subject Predicate Object
1 sg:pub.10.1007/s10897-018-0281-1 schema:about anzsrc-for:11
2 anzsrc-for:1117
3 schema:author Nc3a57448cb8f45e8838a09ccf5d3baa0
4 schema:citation sg:pub.10.1007/s10897-015-9868-y
5 sg:pub.10.1007/s10897-016-0044-9
6 sg:pub.10.1007/s10897-016-9971-8
7 sg:pub.10.1007/s13187-010-0183-x
8 sg:pub.10.1038/ejhg.2010.160
9 sg:pub.10.1038/gim.2012.84
10 sg:pub.10.1038/gim.2013.73
11 sg:pub.10.1038/gim.2016.133
12 sg:pub.10.1038/gim.2016.17
13 sg:pub.10.1038/gim.2016.170
14 sg:pub.10.1038/gim.2016.91
15 sg:pub.10.1186/1472-6947-13-s2-s2
16 sg:pub.10.1186/1472-6947-14-62
17 sg:pub.10.1186/gm353
18 https://doi.org/10.1001/jamapediatrics.2014.2341
19 https://doi.org/10.1002/14651858.cd001431.pub5
20 https://doi.org/10.1002/cncr.23681
21 https://doi.org/10.1002/pd.4347
22 https://doi.org/10.1016/j.pec.2011.11.006
23 https://doi.org/10.1016/s0738-3991(02)00089-7
24 https://doi.org/10.1056/nejmp1215536
25 https://doi.org/10.1080/15265161.2016.1251632
26 https://doi.org/10.1097/aog.0b013e31818e7ec4
27 https://doi.org/10.1111/cge.12415
28 https://doi.org/10.1111/cge.12520
29 https://doi.org/10.1111/j.1399-0004.2011.01636.x
30 https://doi.org/10.1126/science.1220967
31 https://doi.org/10.1126/science.caredit.a1600094
32 https://doi.org/10.1136/bmj.323.7321.1123
33 https://doi.org/10.1136/jmedgenet-2015-103144
34 https://doi.org/10.1177/0272989x03256005
35 https://doi.org/10.1542/peds.2015-3731e
36 https://doi.org/10.2196/jmir.4982
37 https://doi.org/10.2196/medinform.6405
38 schema:datePublished 2018-07-23
39 schema:datePublishedReg 2018-07-23
40 schema:description Clinical use of genome-wide sequencing (GWS) requires pre-test genetic counseling, but the availability of genetic counseling is limited. We developed an interactive online decision-support tool, DECIDE, to make genetic counseling, patient education, and decision support more readily available. We performed a non-inferiority trial comparing DECIDE to standard genetic counseling to assess the clinical value of DECIDE for pre-GWS counseling. One hundred and six parents considering GWS for their children with epilepsy were randomized to conventional genetic counseling or DECIDE. Following the intervention, we measured parents' knowledge and empowerment and asked their opinions about using DECIDE. Both DECIDE and conventional genetic counseling significantly increased parents' knowledge, with no difference between groups. Empowerment also increased but by less than 2% in each group. Parents liked using DECIDE and found it useful; 81% would recommend it to others; 49% wished to use it along with a genetic counselor; 26% of parents preferred to see a genetic counselor; 7% preferred DECIDE alone; and 18% had no preference. DECIDE appears equivalent to genetic counseling at conveying information. In addition, it was highly acceptable to the majority of study participants, many of whom indicated that it was useful to their decision-making. Use of DECIDE as a pre-test tool may extend genetic counseling resources.
41 schema:genre research_article
42 schema:inLanguage en
43 schema:isAccessibleForFree false
44 schema:isPartOf sg:journal.1102286
45 schema:name Assessing an Interactive Online Tool to Support Parents’ Genomic Testing Decisions
46 schema:pagination 1-8
47 schema:productId N1d986394ea7b46c484fdbdca011a59a8
48 N3197d3ccde9d436c8ec50b5963dc7f1b
49 N77729436d6954e23bad87ad9a687a22b
50 Nb14f04e4b1c04a78ab508590b0979e17
51 Nd56f1241b2f04a2f95a7daf3c4231371
52 schema:sameAs https://app.dimensions.ai/details/publication/pub.1105766530
53 https://doi.org/10.1007/s10897-018-0281-1
54 schema:sdDatePublished 2019-04-10T20:05
55 schema:sdLicense https://scigraph.springernature.com/explorer/license/
56 schema:sdPublisher Na247c585f4c34854ac111e5c842a4809
57 schema:url https://link.springer.com/10.1007%2Fs10897-018-0281-1
58 sgo:license sg:explorer/license/
59 sgo:sdDataset articles
60 rdf:type schema:ScholarlyArticle
61 N013288aa74ff4d2ea039c77554a2b4f6 rdf:first sg:person.010511313567.10
62 rdf:rest N04422bc74e3447c88b2d844e574da8e5
63 N04422bc74e3447c88b2d844e574da8e5 rdf:first sg:person.010336264024.79
64 rdf:rest Nad06df8b1832406aafeb9d856cdfe45d
65 N13f81d5e80dc475a86d692d70145ce21 rdf:first sg:person.07753720351.90
66 rdf:rest Nb51b79ad03a04e969151fb3041626d0f
67 N1d986394ea7b46c484fdbdca011a59a8 schema:name readcube_id
68 schema:value 6ce2457f558b5685a7dded9702be6c33caae94c91aa808039388fc93ec97cc00
69 rdf:type schema:PropertyValue
70 N3197d3ccde9d436c8ec50b5963dc7f1b schema:name pubmed_id
71 schema:value 30033481
72 rdf:type schema:PropertyValue
73 N6dc8d7c6af7a4305a1941386022541f7 rdf:first sg:person.01040766554.44
74 rdf:rest N013288aa74ff4d2ea039c77554a2b4f6
75 N722d475a2d8b40ceb125fb8dd1ef81c3 rdf:first sg:person.01203616666.42
76 rdf:rest N6dc8d7c6af7a4305a1941386022541f7
77 N77729436d6954e23bad87ad9a687a22b schema:name dimensions_id
78 schema:value pub.1105766530
79 rdf:type schema:PropertyValue
80 N7eeba9e465c24096b5d384e8571f2990 rdf:first sg:person.01312244442.86
81 rdf:rest N13f81d5e80dc475a86d692d70145ce21
82 Na247c585f4c34854ac111e5c842a4809 schema:name Springer Nature - SN SciGraph project
83 rdf:type schema:Organization
84 Nad06df8b1832406aafeb9d856cdfe45d rdf:first sg:person.012432656042.24
85 rdf:rest rdf:nil
86 Nb14f04e4b1c04a78ab508590b0979e17 schema:name doi
87 schema:value 10.1007/s10897-018-0281-1
88 rdf:type schema:PropertyValue
89 Nb51b79ad03a04e969151fb3041626d0f rdf:first sg:person.07447143677.16
90 rdf:rest Nbcbe706d3e4440e2829732c9b073637f
91 Nbcbe706d3e4440e2829732c9b073637f rdf:first Ndd42dd17c43341e79170aa31240ea661
92 rdf:rest N722d475a2d8b40ceb125fb8dd1ef81c3
93 Nc3a57448cb8f45e8838a09ccf5d3baa0 rdf:first sg:person.0600660015.31
94 rdf:rest N7eeba9e465c24096b5d384e8571f2990
95 Nd56f1241b2f04a2f95a7daf3c4231371 schema:name nlm_unique_id
96 schema:value 9206865
97 rdf:type schema:PropertyValue
98 Ndd42dd17c43341e79170aa31240ea661 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
99 schema:familyName Jones
100 schema:givenName Adrian L.
101 rdf:type schema:Person
102 anzsrc-for:11 schema:inDefinedTermSet anzsrc-for:
103 schema:name Medical and Health Sciences
104 rdf:type schema:DefinedTerm
105 anzsrc-for:1117 schema:inDefinedTermSet anzsrc-for:
106 schema:name Public Health and Health Services
107 rdf:type schema:DefinedTerm
108 sg:journal.1102286 schema:issn 1059-7700
109 1573-3599
110 schema:name Journal of Genetic Counseling
111 rdf:type schema:Periodical
112 sg:person.010336264024.79 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
113 schema:familyName Farrer
114 schema:givenName Matthew J.
115 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.010336264024.79
116 rdf:type schema:Person
117 sg:person.01040766554.44 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
118 schema:familyName Demos
119 schema:givenName Michelle K.
120 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01040766554.44
121 rdf:type schema:Person
122 sg:person.010511313567.10 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
123 schema:familyName Toyota
124 schema:givenName Eric B.
125 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.010511313567.10
126 rdf:type schema:Person
127 sg:person.01203616666.42 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
128 schema:familyName Connolly
129 schema:givenName Mary B.
130 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01203616666.42
131 rdf:type schema:Person
132 sg:person.012432656042.24 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
133 schema:familyName Friedman
134 schema:givenName Jan M.
135 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.012432656042.24
136 rdf:type schema:Person
137 sg:person.01312244442.86 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
138 schema:familyName Birch
139 schema:givenName Patricia H.
140 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01312244442.86
141 rdf:type schema:Person
142 sg:person.0600660015.31 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
143 schema:familyName Adam
144 schema:givenName Shelin
145 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0600660015.31
146 rdf:type schema:Person
147 sg:person.07447143677.16 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
148 schema:familyName Bansback
149 schema:givenName Nick
150 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07447143677.16
151 rdf:type schema:Person
152 sg:person.07753720351.90 schema:affiliation https://www.grid.ac/institutes/grid.17091.3e
153 schema:familyName Coe
154 schema:givenName Rachel R.
155 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07753720351.90
156 rdf:type schema:Person
157 sg:pub.10.1007/s10897-015-9868-y schema:sameAs https://app.dimensions.ai/details/publication/pub.1049690710
158 https://doi.org/10.1007/s10897-015-9868-y
159 rdf:type schema:CreativeWork
160 sg:pub.10.1007/s10897-016-0044-9 schema:sameAs https://app.dimensions.ai/details/publication/pub.1050975399
161 https://doi.org/10.1007/s10897-016-0044-9
162 rdf:type schema:CreativeWork
163 sg:pub.10.1007/s10897-016-9971-8 schema:sameAs https://app.dimensions.ai/details/publication/pub.1010190835
164 https://doi.org/10.1007/s10897-016-9971-8
165 rdf:type schema:CreativeWork
166 sg:pub.10.1007/s13187-010-0183-x schema:sameAs https://app.dimensions.ai/details/publication/pub.1013259626
167 https://doi.org/10.1007/s13187-010-0183-x
168 rdf:type schema:CreativeWork
169 sg:pub.10.1038/ejhg.2010.160 schema:sameAs https://app.dimensions.ai/details/publication/pub.1049624982
170 https://doi.org/10.1038/ejhg.2010.160
171 rdf:type schema:CreativeWork
172 sg:pub.10.1038/gim.2012.84 schema:sameAs https://app.dimensions.ai/details/publication/pub.1010627711
173 https://doi.org/10.1038/gim.2012.84
174 rdf:type schema:CreativeWork
175 sg:pub.10.1038/gim.2013.73 schema:sameAs https://app.dimensions.ai/details/publication/pub.1017226766
176 https://doi.org/10.1038/gim.2013.73
177 rdf:type schema:CreativeWork
178 sg:pub.10.1038/gim.2016.133 schema:sameAs https://app.dimensions.ai/details/publication/pub.1019863058
179 https://doi.org/10.1038/gim.2016.133
180 rdf:type schema:CreativeWork
181 sg:pub.10.1038/gim.2016.17 schema:sameAs https://app.dimensions.ai/details/publication/pub.1042777605
182 https://doi.org/10.1038/gim.2016.17
183 rdf:type schema:CreativeWork
184 sg:pub.10.1038/gim.2016.170 schema:sameAs https://app.dimensions.ai/details/publication/pub.1018772596
185 https://doi.org/10.1038/gim.2016.170
186 rdf:type schema:CreativeWork
187 sg:pub.10.1038/gim.2016.91 schema:sameAs https://app.dimensions.ai/details/publication/pub.1034574046
188 https://doi.org/10.1038/gim.2016.91
189 rdf:type schema:CreativeWork
190 sg:pub.10.1186/1472-6947-13-s2-s2 schema:sameAs https://app.dimensions.ai/details/publication/pub.1027688597
191 https://doi.org/10.1186/1472-6947-13-s2-s2
192 rdf:type schema:CreativeWork
193 sg:pub.10.1186/1472-6947-14-62 schema:sameAs https://app.dimensions.ai/details/publication/pub.1028075726
194 https://doi.org/10.1186/1472-6947-14-62
195 rdf:type schema:CreativeWork
196 sg:pub.10.1186/gm353 schema:sameAs https://app.dimensions.ai/details/publication/pub.1045446395
197 https://doi.org/10.1186/gm353
198 rdf:type schema:CreativeWork
199 https://doi.org/10.1001/jamapediatrics.2014.2341 schema:sameAs https://app.dimensions.ai/details/publication/pub.1010938166
200 rdf:type schema:CreativeWork
201 https://doi.org/10.1002/14651858.cd001431.pub5 schema:sameAs https://app.dimensions.ai/details/publication/pub.1084781396
202 rdf:type schema:CreativeWork
203 https://doi.org/10.1002/cncr.23681 schema:sameAs https://app.dimensions.ai/details/publication/pub.1005330211
204 rdf:type schema:CreativeWork
205 https://doi.org/10.1002/pd.4347 schema:sameAs https://app.dimensions.ai/details/publication/pub.1021339394
206 rdf:type schema:CreativeWork
207 https://doi.org/10.1016/j.pec.2011.11.006 schema:sameAs https://app.dimensions.ai/details/publication/pub.1000493529
208 rdf:type schema:CreativeWork
209 https://doi.org/10.1016/s0738-3991(02)00089-7 schema:sameAs https://app.dimensions.ai/details/publication/pub.1026968089
210 rdf:type schema:CreativeWork
211 https://doi.org/10.1056/nejmp1215536 schema:sameAs https://app.dimensions.ai/details/publication/pub.1021331693
212 rdf:type schema:CreativeWork
213 https://doi.org/10.1080/15265161.2016.1251632 schema:sameAs https://app.dimensions.ai/details/publication/pub.1058399547
214 rdf:type schema:CreativeWork
215 https://doi.org/10.1097/aog.0b013e31818e7ec4 schema:sameAs https://app.dimensions.ai/details/publication/pub.1025277647
216 rdf:type schema:CreativeWork
217 https://doi.org/10.1111/cge.12415 schema:sameAs https://app.dimensions.ai/details/publication/pub.1024336286
218 rdf:type schema:CreativeWork
219 https://doi.org/10.1111/cge.12520 schema:sameAs https://app.dimensions.ai/details/publication/pub.1043535219
220 rdf:type schema:CreativeWork
221 https://doi.org/10.1111/j.1399-0004.2011.01636.x schema:sameAs https://app.dimensions.ai/details/publication/pub.1019028078
222 rdf:type schema:CreativeWork
223 https://doi.org/10.1126/science.1220967 schema:sameAs https://app.dimensions.ai/details/publication/pub.1062466596
224 rdf:type schema:CreativeWork
225 https://doi.org/10.1126/science.caredit.a1600094 schema:sameAs https://app.dimensions.ai/details/publication/pub.1062670988
226 rdf:type schema:CreativeWork
227 https://doi.org/10.1136/bmj.323.7321.1123 schema:sameAs https://app.dimensions.ai/details/publication/pub.1005732758
228 rdf:type schema:CreativeWork
229 https://doi.org/10.1136/jmedgenet-2015-103144 schema:sameAs https://app.dimensions.ai/details/publication/pub.1008349559
230 rdf:type schema:CreativeWork
231 https://doi.org/10.1177/0272989x03256005 schema:sameAs https://app.dimensions.ai/details/publication/pub.1027742407
232 rdf:type schema:CreativeWork
233 https://doi.org/10.1542/peds.2015-3731e schema:sameAs https://app.dimensions.ai/details/publication/pub.1015579118
234 rdf:type schema:CreativeWork
235 https://doi.org/10.2196/jmir.4982 schema:sameAs https://app.dimensions.ai/details/publication/pub.1044036202
236 rdf:type schema:CreativeWork
237 https://doi.org/10.2196/medinform.6405 schema:sameAs https://app.dimensions.ai/details/publication/pub.1092117103
238 rdf:type schema:CreativeWork
239 https://www.grid.ac/institutes/grid.17091.3e schema:alternateName University of British Columbia
240 schema:name Centre for Applied Neurogenetics (CAN), Djavad Mowafaghian Centre, Department of Medical Genetics, University of British Columbia, Vancouver, Canada
241 Department of Medical Genetics, University of British Columbia, 4500 Oak Street, Box 153, V6H 3N1, Vancouver, BC, Canada
242 Department of Neurology, University of British Columbia, Vancouver, Canada
243 Department of Statistics, University of British Columbia, Vancouver, Canada
244 School of Population and Public Health, University of British Columbia, Vancouver, Canada
245 rdf:type schema:Organization
 




Preview window. Press ESC to close (or click here)


...