{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T12:24:21Z","timestamp":1777983861544,"version":"3.51.4"},"reference-count":18,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2023,6,21]],"date-time":"2023-06-21T00:00:00Z","timestamp":1687305600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Scleroderma and Related Disorders"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>How support and informational needs of people with systemic sclerosis (SSc) may differ by time since diagnosis is not known. Our objective was to determine if informational and support needs of recently diagnosed individuals with systemic sclerosis differ from people diagnosed for longer periods of time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>The North American Scleroderma Support Group Members survey included 30 items on reasons for attending support groups. Respondents were classified by time since diagnosis of 0\u20133\u2009years, 4\u20139\u2009years or 10+ years. Survey item responses were dichotomized into Not Important or Somewhat Important versus Important or Very Important. We conducted Chi-square tests with Hochberg\u2019s Sequential Method to identify item differences by time since diagnosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>A total of 175 respondents completed the survey. Most support needs were rated as Important or Very Important by respondents, regardless of disease duration, particularly needs related to interpersonal and social support (10 items; median 81%) and learning about disease treatment and management strategies (11 items; median 82%). Discussing other aspects of living with systemic sclerosis (e.g. spirituality, discussing disease with family and friends) was rated lower (9 items; 44%). Respondents with 0\u20133\u2009years since diagnosis were the highest on 29 of 30 items. Respondents with 0\u20133\u2009years since diagnosis were significantly higher on items related to discussing medical care and 4 items on other aspects (spirituality, talking with family and friends, financial issues, sexual issues).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>People with systemic sclerosis have a wide range of information and support needs, regardless of their disease duration, but people with recent diagnoses have greater needs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/23971983231181726","type":"journal-article","created":{"date-parts":[[2023,6,21]],"date-time":"2023-06-21T04:58:02Z","timestamp":1687323482000},"page":"247-252","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study"],"prefix":"10.1136","volume":"8","author":[{"given":"Sabrina","family":"Provencher","sequence":"first","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada"},{"name":"Department of Psychiatry, McGill University, Montreal, QC, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard S","family":"Henry","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada"},{"name":"Department of Psychiatry, McGill University, Montreal, QC, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carolina","family":"Bacalao","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie-Eve","family":"Carrier","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linda","family":"Kwakkenbos","sequence":"additional","affiliation":[{"name":"Department of Clinical Psychology, Radboud University, Nijmegen, the Netherlands"},{"name":"Department of IQ Healthcare, Radboud University Medical Center, Nijmegen, the Netherlands"},{"name":"Department of Psychiatry, Center for Mindfulness, Radboud University Medical Center, Nijmegen, the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"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, Montreal, QC, Canada"},{"name":"Department of Psychiatry, McGill University, Montreal, QC, Canada"},{"name":"Department of Medicine, McGill University, Montreal, QC, Canada"},{"name":"Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada"},{"name":"Department of Psychology, McGill University, Montreal, QC, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"the Scleroderma Patient-centered Intervention Network (SPIN) Support Group Project Advisory Team","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2023,6,21]]},"reference":[{"key":"bibr1-23971983231181726","doi-asserted-by":"publisher","DOI":"10.1038\/nrdp.2015.2"},{"key":"bibr2-23971983231181726","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2015.04.010"},{"key":"bibr3-23971983231181726","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.151309"},{"key":"bibr4-23971983231181726","doi-asserted-by":"publisher","DOI":"10.1177\/1359105319828150"},{"key":"bibr5-23971983231181726","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780195169409.001.0001","volume-title":"The scleroderma book: a guide for patients and families","author":"Mayes MD.","year":"2005"},{"key":"bibr6-23971983231181726","volume-title":"The first year \u2013 scleroderma: an essential guide for the newly diagnosed","author":"Gottesman 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2023)."},{"key":"bibr16-23971983231181726","unstructured":"National Scleroderma Foundation. https:\/\/scleroderma.org\/ (accessed 24 April 2023)."},{"key":"bibr17-23971983231181726","unstructured":"Sclerodermie Quebec. https:\/\/sclerodermie.ca\/ (accessed 24 April 2023)."},{"key":"bibr18-23971983231181726","doi-asserted-by":"publisher","DOI":"10.53347\/rID-166297"}],"container-title":["Journal of Scleroderma and Related 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