The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

被引：56

作者：

Dougherty, Dane H. ^{[1
]}

Kwakkenbos, Linda ^{[2
,3
,4
]}

Carrier, Marie-Eve ^{[3
]}

Salazar, Gloria ^{[1
]}

Assassi, Shervin ^{[1
]}

Baron, Murray ^{[3
,5
]}

Bartlett, Susan J. ^{[5
,6
,7
]}

Furst, Daniel E. ^{[8
,9
,10
]}

Gottesman, Karen ^{[11
]}

van den Hoogen, Frank ^{[12
,13
]}

Malcarne, Vanessa L. ^{[14
,15
]}

Mouthon, Luc ^{[16
,17
]}

Nielson, Warren R. ^{[18
,19
,20
]}

Poiraudeau, Serge ^{[16
,21
,22
]}

Sauve, Maureen ^{[23
,24
]}

Boire, Gilles ^{[25
]}

Bruns, Alessandra ^{[25
]}

Chung, Lorinda ^{[26
]}

Denton, Christopher ^{[27
]}

Dunne, James V. ^{[28
,29
]}

Fortin, Paul ^{[30
]}

Frech, Tracy ^{[31
]}

Gill, Anna ^{[28
]}

Gordon, Jessica ^{[32
]}

Herrick, Ariane L. ^{[33
]}

Hinchcliff, Monique ^{[34
]}

Hudson, Marie ^{[5
,35
]}

Johnson, Sindhu R. ^{[36
,37
]}

Jones, Niall ^{[38
]}

Kafaja, Suzanne ^{[8
]}

Larche, Maggie ^{[39
]}

Manning, Joanne ^{[40
]}

Pope, Janet ^{[41
]}

Spiera, Robert ^{[32
]}

Steen, Virginia ^{[42
]}

Sutton, Evelyn ^{[43
]}

Thorne, Carter ^{[44
]}

Wilcox, Pearce ^{[29
,30
]}

Thombs, Brett D. ^{[2
,3
,5
,45
,46
,47
,48
]}

Mayes, Maureen D. ^{[1
]}

机构：

[1] Univ Texas McGovern Med Sch, Dept Internal Med, Div Rheumatol, Houston, TX USA

[2] McGill Univ, Dept Psychiat, Montreal, PQ, Canada

[3] Jewish Gen Hosp, Lady Davis Inst Med Res, Montreal, PQ, Canada

[4] Radboud Univ Nijmegen, Inst Behav Sci, Clin Psychol, Nijmegen, Netherlands

[5] McGill Univ, Dept Med, Montreal, PQ, Canada

[6] Johns Hopkins Sch Med, Div Rheumatol, Baltimore, MD USA

[7] McGill Univ, Ctr Hlth, Montreal, PQ, Canada

[8] Univ Calif Los Angeles, Div Rheumatol, Geffen Sch Med, Los Angeles, CA USA

[9] Univ Washington, Med, Seattle, WA 98195 USA

[10] Univ Florence, Med, Florence, Italy

[11] Scleroderma Fdn, Danvers, MA USA

[12] Radboud Univ Nijmegen, Med Ctr, Dept Rheumatol, Nijmegen, Netherlands

[13] Sint Maartensklin, Dept Rheumatol, Nijmegen, Netherlands

[14] San Diego State Univ, Dept Psychol, San Diego, CA 92182 USA

[15] Univ Calif San Diego, San Diego State Univ, San Diego Joint Doctoral Program Clin Psychol, San Diego, CA 92103 USA

[16] Univ Paris 05, AP HP, Med Interne, Paris, France

[17] Hop Cochin, Serv Med Interne, Ctr Reference Malad Syst Autoimmunes Rares Vasc N, Paris, France

[18] St Josephs Hlth Care, Beryl Rheumatol Day Program, London, ON, Canada

[19] St Josephs Hlth Care, Richard Ivey Rheumatol Day Program, London, ON, Canada

[20] Lawson Hlth Res Inst, London, ON, Canada

[21] Hop Cochin, Serv Med Phys & Readaptat, Paris, France

[22] INSERM, IFR Handicap, Paris, France

[23] Scleroderma Soc Ontario, Hamilton, ON, Canada

[24] Scleroderma Soc Canada, Ottawa, ON, Canada

[25] Univ Sherbrooke, Dept Med, Sherbrooke, PQ, Canada

[26] Stanford Univ, Med Med Immunol & Rheumatol, Stanford, CA 94305 USA

[27] Royal Free London Hosp, Dept Rheumatol, London, England

[28] St Pauls Hosp, Rheumatol, Vancouver, BC, Canada

[29] Univ British Columbia, Dept Med, Vancouver, BC, Canada

[30] Univ Laval, Dept Med, Quebec City, PQ, Canada

[31] Univ Utah, Internal Med, Salt Lake City, UT USA

[32] Hosp Special Surg, Dept Rheumatol, 535 E 70th St, New York, NY 10021 USA

[33] Univ Manchester, Div Musculoskeletal Dermatol Sci, Salford Royal NHS Fdn Trust, Manchester, Lancs, England

[34] Northwestern Univ, Feinberg Sch Med, Chicago, IL 60611 USA

[35] Jewish Gen Hosp, Ctr Clin Epidemiol & Community Studies, Montreal, PQ, Canada

[36] Toronto Western Hosp, Mt Sinai Hosp, Toronto Scleroderma Program, Toronto, ON, Canada

[37] Univ Toronto, Toronto, ON, Canada

[38] Univ Alberta, Div Rheumatol, Edmonton, AB, Canada

[39] McMaster Univ, Fac Hlth Sci, Hamilton, ON, Canada

[40] Salford Royal NHS Fdn Trust, Clin & Res Vasc Labs, Salford, Lancs, England

[41] Univ Western Ontario, Bone & Joint Inst, London, ON, Canada

[42] Georgetown Univ, Dept Med, Washington, DC USA

[43] Dalhousie Univ, Div Rheumatol, Halifax, NS, Canada

[44] Southlake Reg Hlth Ctr, Newmarket, ON, Canada

[45] McGill Univ, Dept Epidemiol Biostat & Occupat Hlth, Montreal, PQ, Canada

[46] McGill Univ, Dept Educ & Counselling Psychol, Montreal, PQ, Canada

[47] McGill Univ, Dept Psychol, Montreal, PQ, Canada

[48] McGill Univ, Sch Nursing, Montreal, PQ, Canada

来源：

RHEUMATOLOGY | 2018年 / 57卷 / 09期

基金：

加拿大健康研究院;

关键词：

systemic sclerosis; scleroderma; systemic scleroderma; cohort; CHRONIC DISEASE SCALE; SYSTEMIC-SCLEROSIS; APPEARANCE SCALE; SELF-EFFICACY; SHORT-FORM; VALIDATION; TRIALS; SATISFACTION; DISABILITY; RISK;

D O I：

10.1093/rheumatology/key139

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Objectives. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort is a web-based cohort designed to collect patient-reported outcomes at regular intervals as a framework for conducting trials of psychosocial, educational, self-management and rehabilitation interventions for patients with SSc. The aim of this study was to present baseline demographic, medical and patient-reported outcome data of the SPIN Cohort and to compare it with other large SSc cohorts. Methods. Descriptive statistics were used to summarize SPIN Cohort characteristics; these were compared with published data of the European Scleroderma Trials and Research (EUSTAR) and Canadian Scleroderma Research Group (CSRG) cohorts. Results. Demographic, organ involvement and antibody profile data for SPIN (N= 1125) were generally comparable with that of the EUSTAR (N= 7319) and CSRG (N= 1390) cohorts. There was a high proportion of women and White patients in all cohorts, though relative proportions differed. Scl70 antibody frequency was highest in EUSTAR, somewhat lower in SPIN, and lowest in CSRG, consistent with the higher proportion of interstitial lung disease among dcSSc patients in SPIN compared with in CSRG (48.5 vs 40.3%). RNA polymerase III antibody frequency was highest in SPIN and remarkably lower in EUSTAR (21.1 vs 2.4%), in line with the higher prevalence of SSc renal crisis (4.5 vs 2.1%) in SPIN. Conclusion. Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.

引用

页码：1623 / 1631

页数：9

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