Evaluating the Construct of Damage in Systemic Lupus Erythematosus

被引：17

作者：

Johnson, Sindhu R. ^{[1
,2
,3
]}

Gladman, Dafna D. ^{[1
]}

Brunner, Hermine, I ^{[4
]}

Isenberg, David ^{[5
]}

Clarke, Ann E. ^{[6
]}

Barber, Megan R. W. ^{[6
]}

Arnaud, Laurent ^{[7
]}

Fortin, Paul R. ^{[8
,9
]}

Mosca, Marta ^{[10
]}

Voskuyl, Alexandre E. ^{[11
]}

Manzi, Susan ^{[12
]}

Aranow, Cynthia ^{[13
]}

Askanase, Anca ^{[14
]}

Alarcon, Graciela S. ^{[15
]}

Bae, Sang-Cheol ^{[16
,17
]}

Costedoat-Chalumeau, Nathalie ^{[18
,19
]}

English, Jessica A. ^{[20
]}

Pons-Estel, Guillermo J. ^{[21
]}

Pons-Estel, Bernardo A. ^{[21
]}

Gilman, Rebecca ^{[22
]}

Ginzler, Ellen M. ^{[23
]}

Hanly, John G. ^{[24
,25
]}

Jacobsen, Soren ^{[26
]}

Kalunian, Kenneth ^{[27
]}

Kamen, Diane L. ^{[20
]}

Lambalgen, Chynace ^{[6
]}

Legge, Alexandra ^{[24
,25
]}

Lim, S. Sam ^{[28
]}

Mak, Anselm ^{[29
]}

Morand, Eric F. ^{[30
]}

Peschken, Christine A. ^{[31
]}

Petri, Michelle ^{[32
]}

Rahman, Anisur ^{[5
]}

Ramsey-Goldman, Rosalind ^{[33
]}

Reynolds, John A. ^{[22
,34
]}

Romero-Diaz, Juanita ^{[35
]}

Ruiz-Irastorza, Guillermo ^{[36
]}

Sanchez-Guerrero, Jorge ^{[35
,37
]}

Svenungsson, Elisabet ^{[38
]}

Touma, Zahi ^{[39
,40
]}

Urowitz, Murray ^{[41
,42
]}

Vinet, Evelyne ^{[43
]}

van Vollenhoven, Ronald F. ^{[44
]}

Waldhauser, Heather ^{[6
]}

Wallace, Daniel J. ^{[45
]}

Zoma, Asad ^{[46
]}

Bruce, Ian N. ^{[47
,48
]}

机构：

[1] Univ Toronto, Toronto Western Hosp, Schroeder Arthrit Inst, Krembil Res Inst, Toronto, ON, Canada

[2] Univ Toronto, Mt Sinai Hosp, Krembil Res Inst, Schroeder Arthrit Inst, Toronto, ON, Canada

[3] Univ Toronto, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada

[4] Univ Cincinnati, Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH USA

[5] UCL, Ctr Rheumatol, London, England

[6] Univ Calgary, Cumming Sch Med, Calgary, AB, Canada

[7] Univ Strasbourg, Ctr Natl Reference Malad Autoimmunes & Syst Rares, INSERM UMR S 1109, Strasbourg, France

[8] Univ Laval, Fac Med, Ctr Hosp Univ Quebec, Ctr Rech, Quebec City, PQ, Canada

[9] Ctr ARThrite, Quebec City, PQ, Canada

[10] Univ Pisa, Pisa, Italy

[11] Vrije Univ Amsterdam Med Ctr, Amsterdam UMC, Amsterdam, Netherlands

[12] Lupus Ctr Excellence, Allegheny Hlth Network, Pittsburgh, PA USA

[13] Northwell Hlth, Feinstein Inst Med Res, Manhasset, NY USA

[14] Columbia Univ, Irving Med Ctr, New York, NY USA

[15] Univ Alabama Birmingham, Sch Med, Birmingham, AL USA

[16] Hanyang Univ Hosp Rheumat Dis, Seoul, South Korea

[17] Hanyang Univ, Inst Rheumatol Res, Seoul, South Korea

[18] Univ Paris 05, Cochin Hosp, AP HP, Sorbonne Paris Cite, Paris, France

[19] Sorbonne Paris Cite, Ctr Epidemiol & Stat, INSERM U1153, Paris, France

[20] Med Univ South Carolina, Charleston, SC 29425 USA

[21] Sanatorio Parque, Ctr Reg Enfermedades Autoinmunes & Reumat, Grp Orono, Rosario, Argentina

[22] Univ Birmingham, Inst Inflammat & Ageing, Birmingham, W Midlands, England

[23] SUNY Downstate Hlth Sci Univ, Brooklyn, NY USA

[24] Queen Elizabeth 2 Hlth Sci Ctr, Halifax, NS, Canada

[25] Dalhousie Univ, Halifax, NS, Canada

[26] Copenhagen Univ Hosp, Rigshosp, Copenhagen Lupus & Vasculitis Clin, Copenhagen, Denmark

[27] Univ Calif San Diego, Sch Med, La Jolla, CA 92093 USA

[28] Emory Univ, Sch Med, Atlanta, GA USA

[29] Natl Univ Singapore, Yong Loo Lin Sch Med, Singapore, Singapore

[30] Monash Univ, Melbourne, Vic, Australia

[31] Univ Manitoba, Max Rady Coll Med, Winnipeg, MB, Canada

[32] Johns Hopkins Univ, Sch Med, Baltimore, MD USA

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

[34] West Birmingham Natl Hlth Serv Trust, Birmingham, W Midlands, England

[35] Inst Nacl Ciencias Med & Nutr Salvador Zubiran, Mexico City, DF, Mexico

[36] Univ Basque Country, Biocruces Bizkaia Hlth Res Inst, Hosp Univ Cruces, Baracaldo, Pais Vasco, Spain

[37] Univ Toronto, Univ Hlth Network, Mt Sinai Hosp, Toronto, ON, Canada

[38] Karolinska Univ Hosp, Karolinska Inst, Stockholm, Sweden

[39] Univ Toronto, Toronto Western Hosp, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada

[40] Univ Toronto, Mt Sinai Hosp, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada

[41] Toronto Western Hosp, Krembil Res Inst, Schroeder Arthrit Inst, Toronto, ON, Canada

[42] Mt Sinai Hosp, Krembil Res Inst, Schroeder Arthrit Inst, Toronto, ON, Canada

[43] McGill Univ, Fac Med, Montreal, PQ, Canada

[44] Amsterdam Univ Med Ctr, Duivendrecht, Noord Holland, Netherlands

[45] Univ Calif Los Angeles, David Geffen Sch Med, Cedars Sinai Med Ctr, Los Angeles, CA 90095 USA

[46] Univ Hosp Hairmyres, E Kilbride, Lanark, Scotland

[47] Manchester Univ Hosp Natl Hlth Serv Fdn Trust, NIHR Manchester Musculoskeletal Biomed Res Ctr, Manchester Acad Hlth Sci Ctr, Manchester, Greater Manches, England

[48] Univ Manchester, Fac Biol Med & Hlth, Ctr Epidemiol Versus Arthrit, Manchester, Lancs, England

来源：

ARTHRITIS CARE & RESEARCH | 2023年 / 75卷 / 05期

基金：

加拿大健康研究院;

关键词：

CLINICS AMERICAN-COLLEGE; CLASSIFICATION CRITERIA; DISEASE DAMAGE; ORGAN DAMAGE; INDEX; SCLEROSIS; PREDICTORS; VALIDATION; ARTHRITIS;

D O I：

10.1002/acr.24849

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Objective. The Systemic Lupus International Collaborating Clinics (SLICC), American College of Rheumatology (ACR), and the Lupus Foundation of America are developing a revised systemic lupus erythematosus (SLE) damage index (the SLICC/ACR Damage Index [SDI]). Shifts in the concept of damage in SLE have occurred with new insights into disease manifestations, diagnostics, and therapy. We evaluated contemporary constructs in SLE damage to inform development of the revised SDI.Methods. We conducted a 3-part qualitative study of international SLE experts. Facilitated small groups evaluated the construct underlying the concept of damage in SLE. A consensus meeting using nominal group technique was conducted to achieve agreement on aspects of the conceptual framework and scope of the revised damage index. The framework was finally reviewed and agreed upon by the entire group.Results. Fifty participants from 13 countries were included. The 8 thematic clusters underlying the construct of SLE damage were purpose, items, weighting, reversibility, impact, time frame, attribution, and perspective. The revised SDI will be a discriminative index to measure morbidity in SLE, independent of activity or impact on the patient, and should be related to mortality. The SDI is primarily intended for research purposes and should take a life-course approach. Damage can occur before a diagnosis of SLE but should be attributable to SLE. Damage to an organ is irreversible, but the functional consequences on that organ may improve over time through physiological adaptation or treatment.Conclusion. We identified shifts in the paradigm of SLE damage and developed a unifying conceptual framework. These data form the groundwork for the next phases of SDI development.

引用

页码：998 / 1006

页数：9

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