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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">The role of virtual support groups for patients with hidradenitis suppurativa during the COVID-19 pandemic</title><author><name sortKey="Stout, Molly" sort="Stout, Molly" uniqKey="Stout M" first="Molly" last="Stout">Molly Stout</name></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmc">7189191</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7189191</idno><idno type="RBID">PMC:7189191</idno><idno type="doi">10.1016/j.ijwd.2020.04.009</idno><idno type="pmid">NONE</idno><date when="2020">2020</date><idno type="wicri:Area/Pmc/Corpus">000365</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000365</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">The role of virtual support groups for patients with hidradenitis suppurativa during the COVID-19 pandemic</title><author><name sortKey="Stout, Molly" sort="Stout, Molly" uniqKey="Stout M" first="Molly" last="Stout">Molly Stout</name></author></analytic><series><title level="j">International Journal of Women's Dermatology</title><idno type="eISSN">2352-6475</idno><imprint><date when="2020">2020</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Cole, D W" uniqKey="Cole D">D.W. Cole</name></author><author><name sortKey="Fotouhi, A" uniqKey="Fotouhi A">A. Fotouhi</name></author><author><name sortKey="Fakhoury, J" uniqKey="Fakhoury J">J. Fakhoury</name></author><author><name sortKey="Daveluy, S" uniqKey="Daveluy S">S. Daveluy</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Hessam, S" uniqKey="Hessam S">S. Hessam</name></author><author><name sortKey="Salem, J" uniqKey="Salem J">J. Salem</name></author><author><name sortKey="Bechara, F G" uniqKey="Bechara F">F.G. Bechara</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Keary, E" uniqKey="Keary E">E. Keary</name></author><author><name sortKey="Hevey, D" uniqKey="Hevey D">D. Hevey</name></author><author><name sortKey="Tobin, A M" uniqKey="Tobin A">A.M. Tobin</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Mac Mahon, J" uniqKey="Mac Mahon J">J. Mac Mahon</name></author><author><name sortKey="Kirthi, S" uniqKey="Kirthi S">S. Kirthi</name></author><author><name sortKey="Byrne, N" uniqKey="Byrne N">N. Byrne</name></author><author><name sortKey="O Grady, C" uniqKey="O Grady C">C. O'Grady</name></author><author><name sortKey="Tobin, A M" uniqKey="Tobin A">A.M. Tobin</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Ogunsanya, M E" uniqKey="Ogunsanya M">M.E. Ogunsanya</name></author><author><name sortKey="Brown, C M" uniqKey="Brown C">C.M. Brown</name></author><author><name sortKey="Lin, D" uniqKey="Lin D">D. Lin</name></author></analytic></biblStruct><biblStruct></biblStruct><biblStruct><analytic><author><name sortKey="Vivar, K L" uniqKey="Vivar K">K.L. Vivar</name></author><author><name sortKey="Kruse, L" uniqKey="Kruse L">L. Kruse</name></author></analytic></biblStruct></listBibl></div1></back></TEI><pmc article-type="editorial"><pmc-dir>properties open_access</pmc-dir>
<front><journal-meta><journal-id journal-id-type="nlm-ta">Int J Womens Dermatol</journal-id><journal-id journal-id-type="iso-abbrev">Int J Womens Dermatol</journal-id><journal-title-group><journal-title>International Journal of Women's Dermatology</journal-title></journal-title-group><issn pub-type="epub">2352-6475</issn><publisher><publisher-name>The Author(s). Published by Elsevier Inc. on behalf of Women's Dermatologic Society.</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="pmc">7189191</article-id><article-id pub-id-type="publisher-id">S2352-6475(20)30080-0</article-id><article-id pub-id-type="doi">10.1016/j.ijwd.2020.04.009</article-id><article-categories><subj-group subj-group-type="heading"><subject>Article</subject></subj-group></article-categories><title-group><article-title>The role of virtual support groups for patients with hidradenitis suppurativa during the COVID-19 pandemic</article-title></title-group><contrib-group><contrib contrib-type="author" id="au005"><name><surname>Stout</surname><given-names>Molly</given-names></name><email>Molly.Stout@northwestern.edu</email><xref rid="cor1" ref-type="corresp">⁎</xref></contrib><aff id="af005">Department of Dermatology, Fienberg School of Medicine, Northwestern University, 676 North St Clair Street, Suite 1600, Chicago, Illinois 60611, United States</aff></contrib-group><author-notes><corresp id="cor1"><label>⁎</label>Corresponding author. <email>Molly.Stout@northwestern.edu</email></corresp></author-notes><pub-date pub-type="pmc-release"><day>29</day><month>4</month><year>2020</year></pub-date><pmc-comment> PMC Release delay is 0 months and 0 days and was based on .</pmc-comment>
<pub-date pub-type="epub"><day>29</day><month>4</month><year>2020</year></pub-date><history><date date-type="received"><day>1</day><month>4</month><year>2020</year></date><date date-type="rev-recd"><day>20</day><month>4</month><year>2020</year></date><date date-type="accepted"><day>22</day><month>4</month><year>2020</year></date></history><permissions><copyright-statement>© 2020 The Author(s)</copyright-statement><copyright-year>2020</copyright-year><license><license-p>Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.</license-p></license></permissions></article-meta></front><body><p id="p0005">People with hidradenitis suppurativa (HS) experience significant social isolation as they have a disease that prevents them from working in person, traveling long distances, and engaging in intimate relationships (<xref rid="b0020" ref-type="bibr">Mac Mahon et al., 2020</xref>, <xref rid="b0015" ref-type="bibr">Keary et al., 2019</xref>). Long before the COVID-19 pandemic, they were socially distancing. While many of us have experienced overwhelming disruption and stress in our daily lives in the wake of the coronavirus pandemic, patients with HS face a daily unpredictable struggle with pain, drainage, odor and psychosocial suffering. Virtual support groups can provide much needed social connection, and physicians and trainees can initiate them. On the evening of March 31<sup>st</sup> 2020, a group of three patients and struggling with severe hidradenitis suppurativa, accompanied by facilitators, congregated over live video conference to lament a disease that has impacted their lives to an even greater extent than that of a global pandemic.</p><p id="p0010">Our research team had spent months planning a focus group study to identify unmet needs for patients with HS. As the coronavirus pandemic started tightening its grip on Chicago, we thought proactively how our study could adapt to a society where large group gatherings were now punishable by fine. We invited participants by their provided email addresses in our medical record system as afforded by our IRB-approved protocol two weeks in advance of the scheduled meeting. We attached consent forms and a study information handout. Participants joined the group using a Zoom Video Communications account through Northwestern University. The discussion was semi-structured beginning with introductions, but the content of the discussion was principally patient-directed. Each participant was able to see, speak, and react to other participants in real time. No one experienced technical difficulties that prohibited joining the meeting. While the majority of patients elected to show their faces via webcam, those who deferred were still active discussants.</p><p id="p0015">Despite the <italic>physical</italic> distance, members confided in each other with a profound level of social closeness; “Personally, I don’t really talk about it - the only two people in my life that even know I have HS are my wife and my brother” reported one participant within minutes of joining the discussion. Over the course of the hour-long conference, the participants freely discussed diverse topics - Many were concerned about their susceptibility for COVID-19 with current biologic use, and all agreed upon the silver lining in working from home; it makes coping with the pain and frequent care required of HS more manageable.</p><p id="p0020">They discussed robust participation on social media platform groups on Facebook and Instagram, as well as WhatsApp group chats with global membership. Patients with HS have seemingly been ahead of the virtual social movement, as studies demonstrate these patients obtain information about symptoms, home remedies, and prescription treatments online, even prior to a formal diagnosis by a dermatologist (<xref rid="b0005" ref-type="bibr">Cole et al., 2019</xref>, <xref rid="b0010" ref-type="bibr">Hessam et al., 2017</xref>). While patients with dermatological conditions certainly subscribe to support groups online, the use of live video support groups in this population is not well defined and may revolutionize how support groups are held in the future.</p><p id="p0025">In addition to HS, other groups of patients with documented socially isolating dermatologic diseases include Bechet’s syndrome, cutaneous lupus erythematosus, facial port wine birthmarks and atopic dermatitis, which may benefit greatly from similar virtual support groups (<xref rid="b0030" ref-type="bibr">Ozguler et al., 2019</xref>, <xref rid="b0025" ref-type="bibr">Ogunsanya et al., 2018</xref>, <xref rid="b0035" ref-type="bibr">Vivar and Kruse, 2018</xref>). A non-disclosure agreement signed by all participants prior to the meeting can protect confidentiality when groups are not held as part of an IRB-approved study with a formal consent form. In a time of widespread subscription to physical distancing, our patients with morbid dermatological disease may benefit immensely from live video conferencing support groups, and I encourage any dermatologist or trainee to facilitate one.</p><p id="p0030">Disclaimer</p><p id="p0035">The views expressed in the submitted article are the authors’ own and not an official position of the institution.</p><p id="p0040">Sources of support and conflicts of interest</p><p id="p0045">one</p></body><back><ref-list id="bi005"><title>References</title><ref id="b0005"><element-citation publication-type="journal" id="h0005"><person-group person-group-type="author"><name><surname>Cole</surname><given-names>D.W.</given-names></name><name><surname>Fotouhi</surname><given-names>A.</given-names></name><name><surname>Fakhoury</surname><given-names>J.</given-names></name><name><surname>Daveluy</surname><given-names>S.</given-names></name></person-group><article-title>An internet-based survey study of hidradenitis suppurativa patients: use of the internet for disease-related information</article-title><source>J Am Acad Dermatol.</source><volume>S0190–9622</volume><issue>19</issue><year>2019</year><fpage>33300</fpage><lpage>33306</lpage></element-citation></ref><ref id="b0010"><element-citation publication-type="journal" id="h0010"><person-group person-group-type="author"><name><surname>Hessam</surname><given-names>S.</given-names></name><name><surname>Salem</surname><given-names>J.</given-names></name><name><surname>Bechara</surname><given-names>F.G.</given-names></name></person-group><article-title>Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information?</article-title><source>Int J Dermatol</source><volume>56</volume><issue>7</issue><year>2017</year><fpage>726</fpage><lpage>732</lpage><pub-id pub-id-type="pmid">28321845</pub-id></element-citation></ref><ref id="b0015"><element-citation publication-type="journal" id="h0015"><person-group person-group-type="author"><name><surname>Keary</surname><given-names>E.</given-names></name><name><surname>Hevey</surname><given-names>D.</given-names></name><name><surname>Tobin</surname><given-names>A.M.</given-names></name></person-group><article-title>A qualitative analysis of psychological distress in Hidradenitis Suppurativa Br</article-title><source>J Dermatol.</source><volume>182</volume><issue>2</issue><year>2019</year><fpage>342</fpage><lpage>347</lpage></element-citation></ref><ref id="b0020"><element-citation publication-type="journal" id="h0020"><person-group person-group-type="author"><name><surname>Mac Mahon</surname><given-names>J.</given-names></name><name><surname>Kirthi</surname><given-names>S.</given-names></name><name><surname>Byrne</surname><given-names>N.</given-names></name><name><surname>O'Grady</surname><given-names>C.</given-names></name><name><surname>Tobin</surname><given-names>A.M.</given-names></name></person-group><article-title>An Update on Health-Related Quality of Life and Patient-Reported Outcomes in Hidradenitis Suppurativa</article-title><source>Patient Relat Outcome Meas</source><volume>11</volume><year>2020</year><fpage>21</fpage><lpage>26</lpage><pub-id pub-id-type="pmid">32104123</pub-id></element-citation></ref><ref id="b0025"><element-citation publication-type="journal" id="h0025"><person-group person-group-type="author"><name><surname>Ogunsanya</surname><given-names>M.E.</given-names></name><name><surname>Brown</surname><given-names>C.M.</given-names></name><name><surname>Lin</surname><given-names>D.</given-names></name></person-group><article-title>Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study</article-title><source>Int J Womens Dermatol.</source><volume>4</volume><issue>3</issue><year>2018</year><fpage>152</fpage><lpage>158</lpage><pub-id pub-id-type="pmid">30175217</pub-id></element-citation></ref><ref id="b0030"><mixed-citation publication-type="other" id="h0030">Ozguler Y, Merkel PA, Gurcan M, et al. 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