{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T21:59:26Z","timestamp":1784239166577,"version":"3.55.0"},"reference-count":50,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2018,1,11]],"date-time":"2018-01-11T00:00:00Z","timestamp":1515628800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000142","name":"Arthritis Society","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000142","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2018,2]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Peer\u2010led support groups are an important resource for many people with scleroderma (systemic sclerosis; <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c do not participate in <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c support groups.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A 21\u2010item survey was used to assess reasons for nonattendance among <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c patients in Canada and the <jats:styled-content style=\"fixed-case\">US<\/jats:styled-content>. Exploratory factor analysis (<jats:styled-content style=\"fixed-case\">EFA<\/jats:styled-content>) was conducted, using the software <jats:styled-content style=\"fixed-case\">MP<\/jats:styled-content>lus 7, to group reasons for nonattendance into themes.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 242 people (202 women) with <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c completed the survey. <jats:styled-content style=\"fixed-case\">EFA<\/jats:styled-content> results indicated that a 3\u2010factor model best described the data (\u03c7<jats:sup>2<\/jats:sup>[150] = 302.7; <jats:italic>P<\/jats:italic> &lt; 0.001; Comparative Fit Index = 0.91, Tucker\u2010Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02\u20130.43). The 3 identified themes, reflecting reasons for not attending <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c support groups offered in my area.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p><jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c organizations may be able to address limitations in accessibility and concerns about <jats:styled-content style=\"fixed-case\">SS<\/jats:styled-content>c support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.23220","type":"journal-article","created":{"date-parts":[[2017,2,19]],"date-time":"2017-02-19T21:46:52Z","timestamp":1487540812000},"page":"275-283","source":"Crossref","is-referenced-by-count":17,"title":["Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross\u2010Sectional Study"],"prefix":"10.1002","volume":"70","author":[{"given":"Stephanie T.","family":"Gumuchian","sequence":"first","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital and McGill University Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vanessa C.","family":"Delisle","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital and McGill University Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Pel\u00e1ez","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital and McGill University Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vanessa L.","family":"Malcarne","sequence":"additional","affiliation":[{"name":"San Diego Joint Doctoral Program in Clinical Psychology San Diego State University\/University of California San Diego"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ghassan","family":"El\u2010Baalbaki","sequence":"additional","affiliation":[{"name":"University of Quebec at Montreal Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Kwakkenbos","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital and McGill University Montreal, Quebec, Canada, and Behavioural Science Institute Clinical Psychology, Radboud University Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa R.","family":"Jewett","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital and McGill University Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie\u2010Eve","family":"Carrier","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mia","family":"P\u00e9pin","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brett D.","family":"Thombs","sequence":"additional","affiliation":[{"name":"Lady Davis Institute of the Jewish General Hospital and McGill University Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"and the Scleroderma Support Group Project Advisory Team","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,1,11]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2003.02663.x"},{"key":"e_1_2_6_3_1","unstructured":"European Organisation for Rare Diseases.Rare diseases: understanding this public health priority. 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