Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality
Identifieur interne : 000069 ( Pmc/Checkpoint ); précédent : 000068; suivant : 000070Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality
Auteurs : Ann Christine Catlin ; Sumudinie Fernando ; Ruwan Gamage ; Lorna Renner ; Sampson Antwi ; Jonas Kusah Tettey ; Kofi Aikins Amisah ; Tassos Kyriakides ; Xiangyu Cong ; Nancy R. Reynolds ; Elijah PaintsilSource :
- AIDS Care [ 0954-0121 ] ; 2015.
Abstract
Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure (
Url:
DOI: 10.1080/09540121.2015.1023246
PubMed: 26616131
PubMed Central: 4704410
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality</title><author><name sortKey="Catlin, Ann Christine" sort="Catlin, Ann Christine" uniqKey="Catlin A" first="Ann Christine" last="Catlin">Ann Christine Catlin</name><affiliation><nlm:aff id="aff0001"></nlm:aff></affiliation></author><author><name sortKey="Fernando, Sumudinie" sort="Fernando, Sumudinie" uniqKey="Fernando S" first="Sumudinie" last="Fernando">Sumudinie Fernando</name><affiliation><nlm:aff id="aff0001"></nlm:aff></affiliation></author><author><name sortKey="Gamage, Ruwan" sort="Gamage, Ruwan" uniqKey="Gamage R" first="Ruwan" last="Gamage">Ruwan Gamage</name><affiliation><nlm:aff id="aff0001"></nlm:aff></affiliation></author><author><name sortKey="Renner, Lorna" sort="Renner, Lorna" uniqKey="Renner L" first="Lorna" last="Renner">Lorna Renner</name><affiliation><nlm:aff id="aff0002"></nlm:aff></affiliation></author><author><name sortKey="Antwi, Sampson" sort="Antwi, Sampson" uniqKey="Antwi S" first="Sampson" last="Antwi">Sampson Antwi</name><affiliation><nlm:aff id="aff0003"></nlm:aff></affiliation></author><author><name sortKey="Tettey, Jonas Kusah" sort="Tettey, Jonas Kusah" uniqKey="Tettey J" first="Jonas Kusah" last="Tettey">Jonas Kusah Tettey</name><affiliation><nlm:aff id="aff0002"></nlm:aff></affiliation></author><author><name sortKey="Amisah, Kofi Aikins" sort="Amisah, Kofi Aikins" uniqKey="Amisah K" first="Kofi Aikins" last="Amisah">Kofi Aikins Amisah</name><affiliation><nlm:aff id="aff0003"></nlm:aff></affiliation></author><author><name sortKey="Kyriakides, Tassos" sort="Kyriakides, Tassos" uniqKey="Kyriakides T" first="Tassos" last="Kyriakides">Tassos Kyriakides</name><affiliation><nlm:aff id="aff0004"></nlm:aff></affiliation></author><author><name sortKey="Cong, Xiangyu" sort="Cong, Xiangyu" uniqKey="Cong X" first="Xiangyu" last="Cong">Xiangyu Cong</name><affiliation><nlm:aff id="aff0004"></nlm:aff></affiliation></author><author><name sortKey="Reynolds, Nancy R" sort="Reynolds, Nancy R" uniqKey="Reynolds N" first="Nancy R." last="Reynolds">Nancy R. Reynolds</name><affiliation><nlm:aff id="aff0005"></nlm:aff></affiliation></author><author><name sortKey="Paintsil, Elijah" sort="Paintsil, Elijah" uniqKey="Paintsil E" first="Elijah" last="Paintsil">Elijah Paintsil</name><affiliation><nlm:aff id="aff0006"></nlm:aff></affiliation><affiliation><nlm:aff id="aff0007"></nlm:aff></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">26616131</idno><idno type="pmc">4704410</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4704410</idno><idno type="RBID">PMC:4704410</idno><idno type="doi">10.1080/09540121.2015.1023246</idno><date when="2015">2015</date><idno type="wicri:Area/Pmc/Corpus">000049</idno><idno type="wicri:Area/Pmc/Curation">000049</idno><idno type="wicri:Area/Pmc/Checkpoint">000069</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality</title><author><name sortKey="Catlin, Ann Christine" sort="Catlin, Ann Christine" uniqKey="Catlin A" first="Ann Christine" last="Catlin">Ann Christine Catlin</name><affiliation><nlm:aff id="aff0001"></nlm:aff></affiliation></author><author><name sortKey="Fernando, Sumudinie" sort="Fernando, Sumudinie" uniqKey="Fernando S" first="Sumudinie" last="Fernando">Sumudinie Fernando</name><affiliation><nlm:aff id="aff0001"></nlm:aff></affiliation></author><author><name sortKey="Gamage, Ruwan" sort="Gamage, Ruwan" uniqKey="Gamage R" first="Ruwan" last="Gamage">Ruwan Gamage</name><affiliation><nlm:aff id="aff0001"></nlm:aff></affiliation></author><author><name sortKey="Renner, Lorna" sort="Renner, Lorna" uniqKey="Renner L" first="Lorna" last="Renner">Lorna Renner</name><affiliation><nlm:aff id="aff0002"></nlm:aff></affiliation></author><author><name sortKey="Antwi, Sampson" sort="Antwi, Sampson" uniqKey="Antwi S" first="Sampson" last="Antwi">Sampson Antwi</name><affiliation><nlm:aff id="aff0003"></nlm:aff></affiliation></author><author><name sortKey="Tettey, Jonas Kusah" sort="Tettey, Jonas Kusah" uniqKey="Tettey J" first="Jonas Kusah" last="Tettey">Jonas Kusah Tettey</name><affiliation><nlm:aff id="aff0002"></nlm:aff></affiliation></author><author><name sortKey="Amisah, Kofi Aikins" sort="Amisah, Kofi Aikins" uniqKey="Amisah K" first="Kofi Aikins" last="Amisah">Kofi Aikins Amisah</name><affiliation><nlm:aff id="aff0003"></nlm:aff></affiliation></author><author><name sortKey="Kyriakides, Tassos" sort="Kyriakides, Tassos" uniqKey="Kyriakides T" first="Tassos" last="Kyriakides">Tassos Kyriakides</name><affiliation><nlm:aff id="aff0004"></nlm:aff></affiliation></author><author><name sortKey="Cong, Xiangyu" sort="Cong, Xiangyu" uniqKey="Cong X" first="Xiangyu" last="Cong">Xiangyu Cong</name><affiliation><nlm:aff id="aff0004"></nlm:aff></affiliation></author><author><name sortKey="Reynolds, Nancy R" sort="Reynolds, Nancy R" uniqKey="Reynolds N" first="Nancy R." last="Reynolds">Nancy R. Reynolds</name><affiliation><nlm:aff id="aff0005"></nlm:aff></affiliation></author><author><name sortKey="Paintsil, Elijah" sort="Paintsil, Elijah" uniqKey="Paintsil E" first="Elijah" last="Paintsil">Elijah Paintsil</name><affiliation><nlm:aff id="aff0006"></nlm:aff></affiliation><affiliation><nlm:aff id="aff0007"></nlm:aff></affiliation></author></analytic><series><title level="j">AIDS Care</title><idno type="ISSN">0954-0121</idno><idno type="eISSN">1360-0451</idno><imprint><date when="2015">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure (<ext-link ext-link-type="uri" xlink:href="https://hubzero.org">https://hubzero.org</ext-link>), an open source software platform. The hub database components support: (1) data management – the “databases” component creates, configures, and manages database access, backup, repositories, applications, and access control; (2) data collection – the “forms” component is used to build customized web case report forms that incorporate common data elements and include tailored form submit processing to handle error checking, data validation, and data linkage as the data are stored to the database; and (3) data exploration – the “dataviewer” component provides powerful methods for users to view, search, sort, navigate, explore, map, graph, visualize, aggregate, drill-down, compute, and export data from the database. The Sankofa cyber data management tool supports a user-friendly, secure, and systematic collection of all data. We have screened more than 400 child–caregiver dyads and enrolled nearly 300 dyads, with tens of thousands of data elements. The dataviews have successfully supported all data exploration and analysis needs of the Sankofa Project. Moreover, the ability of the sites to query and view data summaries has proven to be an incentive for collecting complete and accurate data. The data system has all the desirable attributes of an electronic data capture tool. It also provides an added advantage of building data management capacity in resource-limited settings due to its innovative data query and summary views and availability of real-time support by the data management team.</p></div></front><back><div1 type="bibliography"><listBibl><biblStruct></biblStruct><biblStruct><analytic><author><name sortKey="Bart, T" uniqKey="Bart T">T. Bart</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Beck, A T" uniqKey="Beck A">A. T., Beck</name></author><author><name sortKey="Steer, R A" uniqKey="Steer R">R. A. Steer</name></author><author><name sortKey="Brown, G K" uniqKey="Brown G">G. K. 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<front><journal-meta><journal-id journal-id-type="nlm-ta">AIDS Care</journal-id><journal-id journal-id-type="iso-abbrev">AIDS Care</journal-id><journal-id journal-id-type="archive">CAIC</journal-id><journal-id journal-id-type="publisher-id">caic20</journal-id><journal-title-group><journal-title>AIDS Care</journal-title></journal-title-group><issn pub-type="ppub">0954-0121</issn><issn pub-type="epub">1360-0451</issn><publisher><publisher-name>Taylor & Francis</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">26616131</article-id><article-id pub-id-type="pmc">4704410</article-id><article-id pub-id-type="publisher-id">1023246</article-id><article-id pub-id-type="doi">10.1080/09540121.2015.1023246</article-id><article-categories><subj-group subj-group-type="article-type"><subject>Article</subject></subj-group><subj-group subj-group-type="heading"><subject>Original Articles</subject></subj-group></article-categories><title-group><article-title>Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Catlin</surname><given-names>Ann Christine</given-names></name><xref ref-type="aff" rid="aff0001"><sup>a</sup></xref></contrib><contrib contrib-type="author"><name><surname>Fernando</surname><given-names>Sumudinie</given-names></name><xref ref-type="aff" rid="aff0001"><sup>a</sup></xref></contrib><contrib contrib-type="author"><name><surname>Gamage</surname><given-names>Ruwan</given-names></name><xref ref-type="aff" rid="aff0001"><sup>a</sup></xref></contrib><contrib contrib-type="author"><name><surname>Renner</surname><given-names>Lorna</given-names></name><xref ref-type="aff" rid="aff0002"><sup>b</sup></xref></contrib><contrib contrib-type="author"><name><surname>Antwi</surname><given-names>Sampson</given-names></name><xref ref-type="aff" rid="aff0003"><sup>c</sup></xref></contrib><contrib contrib-type="author"><name><surname>Tettey</surname><given-names>Jonas Kusah</given-names></name><xref ref-type="aff" rid="aff0002"><sup>b</sup></xref></contrib><contrib contrib-type="author"><name><surname>Amisah</surname><given-names>Kofi Aikins</given-names></name><xref ref-type="aff" rid="aff0003"><sup>c</sup></xref></contrib><contrib contrib-type="author"><name><surname>Kyriakides</surname><given-names>Tassos</given-names></name><xref ref-type="aff" rid="aff0004"><sup>d</sup></xref></contrib><contrib contrib-type="author"><name><surname>Cong</surname><given-names>Xiangyu</given-names></name><xref ref-type="aff" rid="aff0004"><sup>d</sup></xref></contrib><contrib contrib-type="author"><name><surname>Reynolds</surname><given-names>Nancy R.</given-names></name><xref ref-type="aff" rid="aff0005"><sup>e</sup></xref></contrib><contrib contrib-type="author"><name><surname>Paintsil</surname><given-names>Elijah</given-names></name><xref ref-type="aff" rid="aff0006"><sup>f</sup></xref><xref ref-type="aff" rid="aff0007"><sup>g</sup></xref><xref ref-type="corresp" rid="an0001"><sup>*</sup></xref></contrib><aff id="aff0001"><label><sup>a</sup></label><institution><named-content content-type="institution-name">Rosen Center for Advanced Computing, Purdue University</named-content></institution>,<named-content content-type="city">West Lafayette</named-content>,<named-content content-type="state">IN</named-content>,<country>USA</country></aff><aff id="aff0002"><label><sup>b</sup></label><institution><named-content content-type="department">Department of Child Health</named-content>,<named-content content-type="institution-name">Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana</named-content></institution>,<named-content content-type="city">Accra</named-content>,<country>Ghana</country></aff><aff id="aff0003"><label><sup>c</sup></label><institution><named-content content-type="department">Department of Child Health</named-content>,<named-content content-type="institution-name">Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology</named-content></institution>,<named-content content-type="city">Kumasi</named-content>,<country>Ghana</country></aff><aff id="aff0004"><label><sup>d</sup></label><institution><named-content content-type="department">Yale Center for Analytical Sciences</named-content>,<named-content content-type="institution-name">Yale School of Public Health</named-content></institution>,<named-content content-type="city">New Haven</named-content>,<named-content content-type="state">CT</named-content>,<country>USA</country></aff><aff id="aff0005"><label><sup>e</sup></label><institution><named-content content-type="institution-name">Yale School of Nursing</named-content></institution>,<named-content content-type="city">West Haven</named-content>,<named-content content-type="state">CT</named-content>,<country>USA</country></aff><aff id="aff0006"><label><sup>f</sup></label><institution><named-content content-type="department">Department of Pediatrics</named-content>,<named-content content-type="institution-name">Yale School of Medicine</named-content></institution>,<named-content content-type="city">New Haven</named-content>,<named-content content-type="state">CT</named-content>,<country>USA</country></aff><aff id="aff0007"><label><sup>g</sup></label><institution><named-content content-type="department">Department of Pharmacology</named-content>,<named-content content-type="institution-name">Yale School of Medicine</named-content></institution>,<named-content content-type="city">New Haven</named-content>,<named-content content-type="state">CT</named-content>,<country>USA</country></aff></contrib-group><author-notes><corresp id="an0001"><label>* </label>Corresponding author. Email: <email>elijah.paintsil@yale.edu</email></corresp></author-notes><pub-date pub-type="ppub"><day>2</day><month>11</month><year>2015</year><pmc-comment>string-date: December 2015</pmc-comment>
</pub-date><pub-date pub-type="epub"><day>29</day><month>11</month><year>2015</year></pub-date><volume>27</volume><issue>sup1</issue><issue-title>DISCLOSURE AND HIV SPECIAL ISSUE</issue-title><fpage seq="12">99</fpage><lpage>107</lpage><history><date date-type="received"><day>12</day><month>11</month><year>2014</year></date><date date-type="accepted"><day>23</day><month>2</month><year>2015</year></date></history><permissions><copyright-statement>© 2015 The Author(s). Published by Taylor & Francis.</copyright-statement><copyright-year>2015</copyright-year><copyright-holder>The Author(s)</copyright-holder><license license-type="open-access" xlink:href="http://creativecommons.org/Licenses/by-nc-nd/4.0/"><license-p>This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/Licenses/by-nc-nd/4.0/">http://creativecommons.org/Licenses/by-nc-nd/4.0/</ext-link>), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.</license-p></license></permissions><self-uri content-type="pdf" xlink:type="simple" xlink:href="caic-27-099.pdf"></self-uri><abstract><p>Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure (<ext-link ext-link-type="uri" xlink:href="https://hubzero.org">https://hubzero.org</ext-link>), an open source software platform. The hub database components support: (1) data management – the “databases” component creates, configures, and manages database access, backup, repositories, applications, and access control; (2) data collection – the “forms” component is used to build customized web case report forms that incorporate common data elements and include tailored form submit processing to handle error checking, data validation, and data linkage as the data are stored to the database; and (3) data exploration – the “dataviewer” component provides powerful methods for users to view, search, sort, navigate, explore, map, graph, visualize, aggregate, drill-down, compute, and export data from the database. The Sankofa cyber data management tool supports a user-friendly, secure, and systematic collection of all data. We have screened more than 400 child–caregiver dyads and enrolled nearly 300 dyads, with tens of thousands of data elements. The dataviews have successfully supported all data exploration and analysis needs of the Sankofa Project. Moreover, the ability of the sites to query and view data summaries has proven to be an incentive for collecting complete and accurate data. The data system has all the desirable attributes of an electronic data capture tool. It also provides an added advantage of building data management capacity in resource-limited settings due to its innovative data query and summary views and availability of real-time support by the data management team.</p></abstract><kwd-group kwd-group-type="author"><title>Keywords</title><kwd>cyber infrastructure</kwd><kwd>electronic data capture</kwd><kwd>dataviews</kwd><kwd>HIV disclosure</kwd><kwd>resource-limited setting</kwd></kwd-group><funding-group><award-group><funding-source><named-content content-type="funder-name">National Institutes of Health</named-content><named-content content-type="funder-identifier">10.13039/100000002</named-content></funding-source><award-id>R01HD074253</award-id></award-group><funding-statement>This study was made possible by grant from NIH/NICHD [grant number R01HD074253]. The content of the paper is solely the responsibility of the authors and does not necessarily represent the official view of NIH.</funding-statement></funding-group><counts><fig-count count="5"></fig-count><table-count count="0"></table-count><ref-count count="30"></ref-count><page-count count="9"></page-count></counts></article-meta></front></pmc><affiliations><list></list><tree><noCountry><name sortKey="Amisah, Kofi Aikins" sort="Amisah, Kofi Aikins" uniqKey="Amisah K" first="Kofi Aikins" last="Amisah">Kofi Aikins Amisah</name><name sortKey="Antwi, Sampson" sort="Antwi, Sampson" uniqKey="Antwi S" first="Sampson" last="Antwi">Sampson Antwi</name><name sortKey="Catlin, Ann Christine" sort="Catlin, Ann Christine" uniqKey="Catlin A" first="Ann Christine" last="Catlin">Ann Christine Catlin</name><name sortKey="Cong, Xiangyu" sort="Cong, Xiangyu" uniqKey="Cong X" first="Xiangyu" last="Cong">Xiangyu Cong</name><name sortKey="Fernando, Sumudinie" sort="Fernando, Sumudinie" uniqKey="Fernando S" first="Sumudinie" last="Fernando">Sumudinie Fernando</name><name sortKey="Gamage, Ruwan" sort="Gamage, Ruwan" uniqKey="Gamage R" first="Ruwan" last="Gamage">Ruwan Gamage</name><name sortKey="Kyriakides, Tassos" sort="Kyriakides, Tassos" uniqKey="Kyriakides T" first="Tassos" last="Kyriakides">Tassos Kyriakides</name><name sortKey="Paintsil, Elijah" sort="Paintsil, Elijah" uniqKey="Paintsil E" first="Elijah" last="Paintsil">Elijah Paintsil</name><name sortKey="Renner, Lorna" sort="Renner, Lorna" uniqKey="Renner L" first="Lorna" last="Renner">Lorna Renner</name><name sortKey="Reynolds, Nancy R" sort="Reynolds, Nancy R" uniqKey="Reynolds N" first="Nancy R." last="Reynolds">Nancy R. Reynolds</name><name sortKey="Tettey, Jonas Kusah" sort="Tettey, Jonas Kusah" uniqKey="Tettey J" first="Jonas Kusah" last="Tettey">Jonas Kusah Tettey</name></noCountry></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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