{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T21:59:28Z","timestamp":1784239168001,"version":"3.55.0"},"reference-count":30,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2019,5,29]],"date-time":"2019-05-29T00:00:00Z","timestamp":1559088000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100019175","name":"Scleroderma Society of Ontario","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100019175","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000156","name":"fonds de recherche du qu\u00e9bec - sant\u00e9","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000156","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Scleroderma and Related Disorders"],"published-print":{"date-parts":[[2019,10]]},"abstract":"<jats:p>\n                    Peer-facilitated support groups are an important source for receiving disease-related information and support for people with systemic sclerosis (or scleroderma). A recent survey explored reasons for attending systemic sclerosis support groups in Europe and Australia and used exploratory factor analysis to group reasons for attendance into three main themes: (1) interpersonal and social support, (2) disease treatment and symptom management strategies, and (3) other aspects of living with systemic sclerosis. The objective of the present study was to replicate this study in a sample of patients from North America using confirmatory factor analysis. A 30-item survey was used to assess reasons for attendance and organizational preferences among systemic sclerosis patients in Canada and the United States. In total, 171 members completed the survey. In the confirmatory factor analysis, the three-factor model showed good fit to the data (\u03c7\n                    <jats:sup>2<\/jats:sup>\n                    (399)\u2009=\u2009646.0, p\u2009&lt;\u20090.001, Tucker\u2013Lewis index\u2009=\u20090.97, comparative fit index\u2009=\u20090.97, root mean square error approximation\u2009=\u20090.06). On average, respondents rated 22 (73%) of 30 items as \u201cimportant\u201d or \u201cvery important\u201d reasons for attending support groups. Among organizational preferences, respondents emphasized the importance of the ability to share feelings and concerns, as well as educational aspects. Findings of our study suggest that reasons for attending support groups are similar for patients from Europe, Australia, and North America and that support groups should facilitate social support as well as disease education. These results inform the development of training programs for current and future systemic sclerosis support group leaders across the globe.\n                  <\/jats:p>","DOI":"10.1177\/2397198319849806","type":"journal-article","created":{"date-parts":[[2019,5,29]],"date-time":"2019-05-29T04:59:27Z","timestamp":1559105967000},"page":"173-186","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":10,"title":["Reasons for attending support groups and organizational preferences: A replication study using the North American Scleroderma Support Group Survey"],"prefix":"10.1136","volume":"4","author":[{"given":"Mia","family":"P\u00e9pin","sequence":"first","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Kwakkenbos","sequence":"additional","affiliation":[{"name":"Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie-Eve","family":"Carrier","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Pel\u00e1ez","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montr\u00e9al, QC, Canada"},{"name":"Department of Educational and Counselling Psychology, McGill University, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ghassan","family":"El-Baalbaki","sequence":"additional","affiliation":[{"name":"Department of Psychology, Universit\u00e9 du Qu\u00e9bec \u00e0 Montr\u00e9al, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vanessa L","family":"Malcarne","sequence":"additional","affiliation":[{"name":"Department of Psychology, San Diego State University, San Diego, CA, USA"},{"name":"San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University\/University of California, San Diego, CA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5644-8432","authenticated-orcid":false,"given":"Brett D","family":"Thombs","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montr\u00e9al, QC, Canada"},{"name":"Department of Educational and Counselling Psychology, McGill University, Montr\u00e9al, QC, Canada"},{"name":"Department of Psychiatry, McGill University, Montr\u00e9al, QC, Canada"},{"name":"Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montr\u00e9al, QC, Canada"},{"name":"Department of Psychology, McGill University, Montr\u00e9al, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"the Scleroderma Patient-centered Intervention Network (SPIN) Support Group Project Advisory Team","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2019,5,29]]},"reference":[{"key":"bibr1-2397198319849806","unstructured":"World Health Organization. Rare diseases: priority diseases and reasons for inclusion. http:\/\/www.who.int\/medicines\/areas\/priority_medicines\/Ch6_19Rare.pdf (accessed 9 December 2018)."},{"key":"bibr2-2397198319849806","unstructured":"Kole A, Faurisson F. The voice of 12,000 patients: experiences and expectations of rare disease patients on diagnosis and care in Europe. http:\/\/www.eurordis.org\/IMG\/pdf\/voice_12000_patients\/EURORDISCARE_FULLBOOKr.pdf (accessed 3 December 2018)."},{"key":"bibr3-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33380"},{"key":"bibr4-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2009.00552.x"},{"key":"bibr5-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2004.02.010"},{"key":"bibr6-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1007\/s00103-007-0382-8"},{"key":"bibr7-2397198319849806","first-page":"1279","volume-title":"Kelley\u2019s Textbook of Rheumatology","author":"Seibold J.","year":"2005","edition":"7"},{"key":"bibr8-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1007\/978-0-387-68566-3_17"},{"key":"bibr9-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keq310"},{"key":"bibr10-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2015.04.010"},{"key":"bibr11-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-016-0213-9"},{"issue":"5","key":"bibr12-2397198319849806","first-page":"56","volume":"34","author":"Delisle VC","year":"2016","journal-title":"Clin Exp Rheumatol"},{"key":"bibr13-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23220"},{"key":"bibr14-2397198319849806","unstructured":"Scleroderma Society of Canada Find a support group. http:\/\/www.scleroderma.ca\/Support\/Find-A-Support-Group.php (accessed 8 November 2018)."},{"key":"bibr15-2397198319849806","unstructured":"Scleroderma Foundation Support groups. http:\/\/www.scleroderma.org\/site\/PageServer?pagename=ts_support_groups#.WVKfdxPytgc (accessed 18 November 2018)."},{"key":"bibr16-2397198319849806","first-page":"1","volume":"19","author":"Gumuchian ST","year":"2017","journal-title":"Disability and Rehabilitation"},{"key":"bibr17-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1037\/1040-3590.7.3.286"},{"key":"bibr18-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1037\/a0015108"},{"key":"bibr19-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1080\/08858199209528178"},{"key":"bibr20-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1080\/00981380801970673"},{"key":"bibr21-2397198319849806","unstructured":"Muth\u00e9n LK, Muth\u00e9n BO. Mplus user\u2019s guide version 3.11. Los Angeles, CA: Muth\u00e9n & Muth\u00e9n, 1998\u20132004."},{"key":"bibr22-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1007\/BF02291170"},{"key":"bibr23-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1037\/0033-2909.107.2.238"},{"key":"bibr24-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1207\/s15327906mbr2502_4"},{"key":"bibr25-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1037\/0033-2909.114.3.552"},{"key":"bibr26-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1080\/10705519909540118"},{"key":"bibr27-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1037\/1082-989X.7.1.64"},{"key":"bibr28-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-013325"},{"key":"bibr29-2397198319849806","doi-asserted-by":"publisher","DOI":"10.1002\/jcop.21677"},{"key":"bibr30-2397198319849806","doi-asserted-by":"crossref","unstructured":"Thombs BD, Dyas L, P\u00e9pin M, et al. Feasibility trial of the Scleroderma Patient-centered Intervention Network Support Group Leader Education (SPIN-SSLED) Program. In: Proceedings of the Canadian rheumatology association annual scientific meeting, Montreal, QC, Canada, 27 February\u20132 March 2019.","DOI":"10.1136\/bmjopen-2019-029935"}],"container-title":["Journal of Scleroderma and Related Disorders"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/2397198319849806","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/2397198319849806","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/2397198319849806","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T11:52:43Z","timestamp":1777981963000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/2397198319849806"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,5,29]]},"references-count":30,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2019,10]]}},"alternative-id":["10.1177\/2397198319849806"],"URL":"https:\/\/doi.org\/10.1177\/2397198319849806","relation":{},"ISSN":["2397-1983","2397-1991"],"issn-type":[{"value":"2397-1983","type":"print"},{"value":"2397-1991","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,5,29]]}}}