The burden of systemic sclerosis in Switzerland : the Swiss systemic sclerosis EUSTAR cohort
OBJECTIVES: Characteristics of Swiss patients with systemic sclerosis have not been described so far. The aim of the current study was to identify unmet needs in comparison with other European countries that could inform specific interventions to improve the care of systemic sclerosis patients. METH...
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| creator | Hernndez, Jasmin Jordan, Suzana Dobrota, Rucsandra Iudici, Michele Hasler, Paul Ribi, Camillo Villiger, Peter Vlachoyiannopoulos, Panayiotis Vacca, Alessandra Garzanova, Ludmila Giollo, Alessandro Rosato, Edoardo Kötter, Ina Carreira, Patricia E Doria, Andrea Henes, Jrg Mller-Ladner, Ulf Smith, Vanessa Distler, Jrg Gabrielli, Armando Hoffman-Vold, Anna-Maria Walker, Ulrich Distler, Oliver collaborators, the EUSTAR |
| description | OBJECTIVES: Characteristics of Swiss patients with systemic sclerosis have not been described so far. The aim of the current study was to identify unmet needs in comparison with other European countries that could inform specific interventions to improve the care of systemic sclerosis patients.
METHODS: We analysed Swiss and other European systemic sclerosis patients registered in European Scleroderma Trials And Research (EUSTAR) and the Very Early Diagnosis Of Systemic Sclerosis (VEDOSS) cohort. Demographics, clinical profiles, organ involvement and survival of established, early/mild and very early / very mild systemic sclerosis patients were described and compared between the cohorts.
RESULTS: We included 679 Swiss and 8793 European systemic sclerosis patients in the analysis. Over 95% of patients in both cohorts were Caucasian, disease subsets were similar, and no age difference was found. The Swiss cohort had more male patients (25% vs 16% European, p = 0.005) and higher prevalence of early/mild and very early / very mild patients (26.1 vs 8.5% European and 14.9% vs 6.7% European, respectively, both p |
| format | Article |
| fullrecord | <record><control><sourceid>ghent</sourceid><recordid>TN_cdi_ghent_librecat_oai_archive_ugent_be_8742161</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>oai_archive_ugent_be_8742161</sourcerecordid><originalsourceid>FETCH-ghent_librecat_oai_archive_ugent_be_87421613</originalsourceid><addsrcrecordid>eNqdi80KgkAURmdRkP28w30BQc38aRdhtE7bBcM4XnXCHJg7FvX0GbRs1erAd74zYY4fBqG7TtN4xuZEV88LksjfOOxStAjlYCrsQddAT7J4UxJIdmg0KQLVQ_5Q9oWmE30FW7BjMS5Ev97ZOS92J5C61cYu2bQWHeHqywULDlmxP7pNi73lnSoNSmG5FooLI1t1Rz40H1UiT-Iw8CN__Vf0Bk8MT3E</addsrcrecordid><sourcetype>Institutional Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype></control><display><type>article</type><title>The burden of systemic sclerosis in Switzerland : the Swiss systemic sclerosis EUSTAR cohort</title><source>DOAJ Directory of Open Access Journals</source><source>Ghent University Academic Bibliography</source><source>Alma/SFX Local Collection</source><creator>Hernndez, Jasmin ; Jordan, Suzana ; Dobrota, Rucsandra ; Iudici, Michele ; Hasler, Paul ; Ribi, Camillo ; Villiger, Peter ; Vlachoyiannopoulos, Panayiotis ; Vacca, Alessandra ; Garzanova, Ludmila ; Giollo, Alessandro ; Rosato, Edoardo ; Kötter, Ina ; Carreira, Patricia E ; Doria, Andrea ; Henes, Jrg ; Mller-Ladner, Ulf ; Smith, Vanessa ; Distler, Jrg ; Gabrielli, Armando ; Hoffman-Vold, Anna-Maria ; Walker, Ulrich ; Distler, Oliver ; collaborators, the EUSTAR</creator><creatorcontrib>Hernndez, Jasmin ; Jordan, Suzana ; Dobrota, Rucsandra ; Iudici, Michele ; Hasler, Paul ; Ribi, Camillo ; Villiger, Peter ; Vlachoyiannopoulos, Panayiotis ; Vacca, Alessandra ; Garzanova, Ludmila ; Giollo, Alessandro ; Rosato, Edoardo ; Kötter, Ina ; Carreira, Patricia E ; Doria, Andrea ; Henes, Jrg ; Mller-Ladner, Ulf ; Smith, Vanessa ; Distler, Jrg ; Gabrielli, Armando ; Hoffman-Vold, Anna-Maria ; Walker, Ulrich ; Distler, Oliver ; collaborators, the EUSTAR</creatorcontrib><description>OBJECTIVES: Characteristics of Swiss patients with systemic sclerosis have not been described so far. The aim of the current study was to identify unmet needs in comparison with other European countries that could inform specific interventions to improve the care of systemic sclerosis patients.
METHODS: We analysed Swiss and other European systemic sclerosis patients registered in European Scleroderma Trials And Research (EUSTAR) and the Very Early Diagnosis Of Systemic Sclerosis (VEDOSS) cohort. Demographics, clinical profiles, organ involvement and survival of established, early/mild and very early / very mild systemic sclerosis patients were described and compared between the cohorts.
RESULTS: We included 679 Swiss and 8793 European systemic sclerosis patients in the analysis. Over 95% of patients in both cohorts were Caucasian, disease subsets were similar, and no age difference was found. The Swiss cohort had more male patients (25% vs 16% European, p = 0.005) and higher prevalence of early/mild and very early / very mild patients (26.1 vs 8.5% European and 14.9% vs 6.7% European, respectively, both p <0.0001). Disease duration in established systemic sclerosis patients at first presentation was numerically shorter but not significant in the Swiss cohort: 5.0 years (1-12) Swiss vs 6.0 years (2-12) years European, p = 0.055). Despite the earlier referral of Swiss patients to systemic sclerosis expert centres, they showed evidence of more severe disease, particularly in the limited cutaneous systemic sclerosis subset, but no differences in overall survival on longitudinal follow-up were observed.
CONCLUSION: This is the first report of the national Swiss EUSTAR cohort. It identifies earlier referral to systemic sclerosis expert centres, before major organ damage occurs, and when outcome can still be modified, as a priority to improve care of patients with systemic sclerosis.</description><identifier>ISSN: 1424-3997</identifier><identifier>ISSN: 1424-7860</identifier><language>eng</language><subject>General Medicine ; Medicine and Health Sciences</subject><creationdate>2021</creationdate><rights>Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Public License (CC BY-NC-ND 4.0) info:eu-repo/semantics/openAccess</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,315,780,784,4024,27860</link.rule.ids></links><search><creatorcontrib>Hernndez, Jasmin</creatorcontrib><creatorcontrib>Jordan, Suzana</creatorcontrib><creatorcontrib>Dobrota, Rucsandra</creatorcontrib><creatorcontrib>Iudici, Michele</creatorcontrib><creatorcontrib>Hasler, Paul</creatorcontrib><creatorcontrib>Ribi, Camillo</creatorcontrib><creatorcontrib>Villiger, Peter</creatorcontrib><creatorcontrib>Vlachoyiannopoulos, Panayiotis</creatorcontrib><creatorcontrib>Vacca, Alessandra</creatorcontrib><creatorcontrib>Garzanova, Ludmila</creatorcontrib><creatorcontrib>Giollo, Alessandro</creatorcontrib><creatorcontrib>Rosato, Edoardo</creatorcontrib><creatorcontrib>Kötter, Ina</creatorcontrib><creatorcontrib>Carreira, Patricia E</creatorcontrib><creatorcontrib>Doria, Andrea</creatorcontrib><creatorcontrib>Henes, Jrg</creatorcontrib><creatorcontrib>Mller-Ladner, Ulf</creatorcontrib><creatorcontrib>Smith, Vanessa</creatorcontrib><creatorcontrib>Distler, Jrg</creatorcontrib><creatorcontrib>Gabrielli, Armando</creatorcontrib><creatorcontrib>Hoffman-Vold, Anna-Maria</creatorcontrib><creatorcontrib>Walker, Ulrich</creatorcontrib><creatorcontrib>Distler, Oliver</creatorcontrib><creatorcontrib>collaborators, the EUSTAR</creatorcontrib><title>The burden of systemic sclerosis in Switzerland : the Swiss systemic sclerosis EUSTAR cohort</title><description>OBJECTIVES: Characteristics of Swiss patients with systemic sclerosis have not been described so far. The aim of the current study was to identify unmet needs in comparison with other European countries that could inform specific interventions to improve the care of systemic sclerosis patients.
METHODS: We analysed Swiss and other European systemic sclerosis patients registered in European Scleroderma Trials And Research (EUSTAR) and the Very Early Diagnosis Of Systemic Sclerosis (VEDOSS) cohort. Demographics, clinical profiles, organ involvement and survival of established, early/mild and very early / very mild systemic sclerosis patients were described and compared between the cohorts.
RESULTS: We included 679 Swiss and 8793 European systemic sclerosis patients in the analysis. Over 95% of patients in both cohorts were Caucasian, disease subsets were similar, and no age difference was found. The Swiss cohort had more male patients (25% vs 16% European, p = 0.005) and higher prevalence of early/mild and very early / very mild patients (26.1 vs 8.5% European and 14.9% vs 6.7% European, respectively, both p <0.0001). Disease duration in established systemic sclerosis patients at first presentation was numerically shorter but not significant in the Swiss cohort: 5.0 years (1-12) Swiss vs 6.0 years (2-12) years European, p = 0.055). Despite the earlier referral of Swiss patients to systemic sclerosis expert centres, they showed evidence of more severe disease, particularly in the limited cutaneous systemic sclerosis subset, but no differences in overall survival on longitudinal follow-up were observed.
CONCLUSION: This is the first report of the national Swiss EUSTAR cohort. It identifies earlier referral to systemic sclerosis expert centres, before major organ damage occurs, and when outcome can still be modified, as a priority to improve care of patients with systemic sclerosis.</description><subject>General Medicine</subject><subject>Medicine and Health Sciences</subject><issn>1424-3997</issn><issn>1424-7860</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>ADGLB</sourceid><recordid>eNqdi80KgkAURmdRkP28w30BQc38aRdhtE7bBcM4XnXCHJg7FvX0GbRs1erAd74zYY4fBqG7TtN4xuZEV88LksjfOOxStAjlYCrsQddAT7J4UxJIdmg0KQLVQ_5Q9oWmE30FW7BjMS5Ev97ZOS92J5C61cYu2bQWHeHqywULDlmxP7pNi73lnSoNSmG5FooLI1t1Rz40H1UiT-Iw8CN__Vf0Bk8MT3E</recordid><startdate>2021</startdate><enddate>2021</enddate><creator>Hernndez, Jasmin</creator><creator>Jordan, Suzana</creator><creator>Dobrota, Rucsandra</creator><creator>Iudici, Michele</creator><creator>Hasler, Paul</creator><creator>Ribi, Camillo</creator><creator>Villiger, Peter</creator><creator>Vlachoyiannopoulos, Panayiotis</creator><creator>Vacca, Alessandra</creator><creator>Garzanova, Ludmila</creator><creator>Giollo, Alessandro</creator><creator>Rosato, Edoardo</creator><creator>Kötter, Ina</creator><creator>Carreira, Patricia E</creator><creator>Doria, Andrea</creator><creator>Henes, Jrg</creator><creator>Mller-Ladner, Ulf</creator><creator>Smith, Vanessa</creator><creator>Distler, Jrg</creator><creator>Gabrielli, Armando</creator><creator>Hoffman-Vold, Anna-Maria</creator><creator>Walker, Ulrich</creator><creator>Distler, Oliver</creator><creator>collaborators, the EUSTAR</creator><scope>ADGLB</scope></search><sort><creationdate>2021</creationdate><title>The burden of systemic sclerosis in Switzerland : the Swiss systemic sclerosis EUSTAR cohort</title><author>Hernndez, Jasmin ; Jordan, Suzana ; Dobrota, Rucsandra ; Iudici, Michele ; Hasler, Paul ; Ribi, Camillo ; Villiger, Peter ; Vlachoyiannopoulos, Panayiotis ; Vacca, Alessandra ; Garzanova, Ludmila ; Giollo, Alessandro ; Rosato, Edoardo ; Kötter, Ina ; Carreira, Patricia E ; Doria, Andrea ; Henes, Jrg ; Mller-Ladner, Ulf ; Smith, Vanessa ; Distler, Jrg ; Gabrielli, Armando ; Hoffman-Vold, Anna-Maria ; Walker, Ulrich ; Distler, Oliver ; collaborators, the EUSTAR</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-ghent_librecat_oai_archive_ugent_be_87421613</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>General Medicine</topic><topic>Medicine and Health Sciences</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hernndez, Jasmin</creatorcontrib><creatorcontrib>Jordan, Suzana</creatorcontrib><creatorcontrib>Dobrota, Rucsandra</creatorcontrib><creatorcontrib>Iudici, Michele</creatorcontrib><creatorcontrib>Hasler, Paul</creatorcontrib><creatorcontrib>Ribi, Camillo</creatorcontrib><creatorcontrib>Villiger, Peter</creatorcontrib><creatorcontrib>Vlachoyiannopoulos, Panayiotis</creatorcontrib><creatorcontrib>Vacca, Alessandra</creatorcontrib><creatorcontrib>Garzanova, Ludmila</creatorcontrib><creatorcontrib>Giollo, Alessandro</creatorcontrib><creatorcontrib>Rosato, Edoardo</creatorcontrib><creatorcontrib>Kötter, Ina</creatorcontrib><creatorcontrib>Carreira, Patricia E</creatorcontrib><creatorcontrib>Doria, Andrea</creatorcontrib><creatorcontrib>Henes, Jrg</creatorcontrib><creatorcontrib>Mller-Ladner, Ulf</creatorcontrib><creatorcontrib>Smith, Vanessa</creatorcontrib><creatorcontrib>Distler, Jrg</creatorcontrib><creatorcontrib>Gabrielli, Armando</creatorcontrib><creatorcontrib>Hoffman-Vold, Anna-Maria</creatorcontrib><creatorcontrib>Walker, Ulrich</creatorcontrib><creatorcontrib>Distler, Oliver</creatorcontrib><creatorcontrib>collaborators, the EUSTAR</creatorcontrib><collection>Ghent University Academic Bibliography</collection></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hernndez, Jasmin</au><au>Jordan, Suzana</au><au>Dobrota, Rucsandra</au><au>Iudici, Michele</au><au>Hasler, Paul</au><au>Ribi, Camillo</au><au>Villiger, Peter</au><au>Vlachoyiannopoulos, Panayiotis</au><au>Vacca, Alessandra</au><au>Garzanova, Ludmila</au><au>Giollo, Alessandro</au><au>Rosato, Edoardo</au><au>Kötter, Ina</au><au>Carreira, Patricia E</au><au>Doria, Andrea</au><au>Henes, Jrg</au><au>Mller-Ladner, Ulf</au><au>Smith, Vanessa</au><au>Distler, Jrg</au><au>Gabrielli, Armando</au><au>Hoffman-Vold, Anna-Maria</au><au>Walker, Ulrich</au><au>Distler, Oliver</au><au>collaborators, the EUSTAR</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The burden of systemic sclerosis in Switzerland : the Swiss systemic sclerosis EUSTAR cohort</atitle><date>2021</date><risdate>2021</risdate><issn>1424-3997</issn><issn>1424-7860</issn><abstract>OBJECTIVES: Characteristics of Swiss patients with systemic sclerosis have not been described so far. The aim of the current study was to identify unmet needs in comparison with other European countries that could inform specific interventions to improve the care of systemic sclerosis patients.
METHODS: We analysed Swiss and other European systemic sclerosis patients registered in European Scleroderma Trials And Research (EUSTAR) and the Very Early Diagnosis Of Systemic Sclerosis (VEDOSS) cohort. Demographics, clinical profiles, organ involvement and survival of established, early/mild and very early / very mild systemic sclerosis patients were described and compared between the cohorts.
RESULTS: We included 679 Swiss and 8793 European systemic sclerosis patients in the analysis. Over 95% of patients in both cohorts were Caucasian, disease subsets were similar, and no age difference was found. The Swiss cohort had more male patients (25% vs 16% European, p = 0.005) and higher prevalence of early/mild and very early / very mild patients (26.1 vs 8.5% European and 14.9% vs 6.7% European, respectively, both p <0.0001). Disease duration in established systemic sclerosis patients at first presentation was numerically shorter but not significant in the Swiss cohort: 5.0 years (1-12) Swiss vs 6.0 years (2-12) years European, p = 0.055). Despite the earlier referral of Swiss patients to systemic sclerosis expert centres, they showed evidence of more severe disease, particularly in the limited cutaneous systemic sclerosis subset, but no differences in overall survival on longitudinal follow-up were observed.
CONCLUSION: This is the first report of the national Swiss EUSTAR cohort. It identifies earlier referral to systemic sclerosis expert centres, before major organ damage occurs, and when outcome can still be modified, as a priority to improve care of patients with systemic sclerosis.</abstract><oa>free_for_read</oa></addata></record> |
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| subjects | General Medicine Medicine and Health Sciences |
| title | The burden of systemic sclerosis in Switzerland : the Swiss systemic sclerosis EUSTAR cohort |
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