Development and validation of the Scleroderma Clinical Trials Consortium Damage Index (SCTC-DI): a novel instrument to quantify organ damage in systemic sclerosis

被引：54

作者：

Ferdowsi, Nava ^{[1
,2
,11
]}

Huq, Molla ^{[1
,2
]}

Stevens, Wendy ^{[2
,16
]}

Hudson, Marie ^{[3
,13
,14
]}

Wang, Mianbo ^{[4
]}

Tay, Tien ^{[1
,2
,17
]}

Burchell, Jodie L. ^{[1
]}

Mancuso, Sam ^{[1
]}

Rabusa, Candice ^{[2
]}

Sundararajan, Vijaya ^{[5
]}

Prior, David ^{[1
]}

Proudman, Susanna M. ^{[6
]}

Baron, Murray ^{[7
]}

Nikpour, Mandana ^{[1
,2
,8
]}

Frech, Tracy ^{[12
]}

Hudson, Marie ^{[3
,13
,14
]}

Proudman, Susanna ^{[15
]}

Stevens, Wendy ^{[2
,16
]}

Tay, Tien ^{[1
,2
,17
]}

Chatterjee, Souyma ^{[18
]}

Chung, Lorinda ^{[19
]}

Gordon, Jessica K. ^{[20
]}

Haemel, Anna ^{[21
]}

Johnson, Sindhu R. ^{[22
]}

Khanna, Dinesh ^{[23
]}

Medsger, Thomas A. ^{[24
]}

Merkel, Peter ^{[25
]}

Pauling, John ^{[26
]}

Pope, Janet E. ^{[27
]}

Rodriguez-Reyna, Tatiana ^{[28
]}

Saketkoo, Lesley ^{[29
]}

Seibold, James R. ^{[30
]}

Shah, Ankoor ^{[31
]}

Steen, Virginia ^{[32
]}

Strickland, Gemma ^{[33
]}

Ngian, Gene-Siew

Nikpour, Mandana ^{[1
,2
,8
]}

Proudman, Susanna ^{[15
]}

Rischmueller, Maureen

Roddy, Janet

Sahhar, Joanne

Stevens, Wendy ^{[2
,16
]}

Strickland, Gemma ^{[33
]}

Walker, Jenny

Youssef, Peter

Pope, J.

Baron, M. ^{[9
,10
]}

Markland, J.

Robinson, D.

Jones, N.

机构：

[1] Univ Melbourne, Dept Med, St Vincent Hosp, Fitzroy, Vic, Australia

[2] St Vincent Hosp, Rheumatol, Fitzroy, Vic, Australia

[3] McGill Univ, Med, Montreal, PQ, Canada

[4] Lady Davis Inst Med Res, Montreal, PQ, Canada

[5] La Trobe Univ, Publ Hlth, Melbourne, Vic, Australia

[6] Royal Adelaide Hosp, Rheumatol, Adelaide, SA, Australia

[7] Jewish Gen Hosp, Rheumatol, Montreal, PQ, Canada

[8] Univ Melbourne, St Vincents Hosp, Melbourne, Vic, Australia

[9] Lady Davis Inst Med Res, Montreal, PQ, Canada

[10] Jewish Gen Hosp, Montreal, PQ, Canada

[11] Univ Melbourne, St Vincents Hosp, Melbourne, Vic, Australia

[12] Univ Utah, Salt Lake City, UT 84112 USA

[13] Lady Davis Inst Med Res, Montreal, PQ, Canada

[14] Jewish Gen Hosp, Montreal, PQ, Canada

[15] Univ Adelaide, Royal Adelaide Hosp, Adelaide, SA, Australia

[16] St Vincents Hosp, Melbourne, Vic, Australia

[17] Univ Melbourne, Melbourne, Vic, Australia

[18] Cleveland Clin, Cleveland, OH 44106 USA

[19] Stanford Univ, Stanford, CA 94305 USA

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

[21] Univ Calif San Francisco, San Francisco, CA 94143 USA

[22] Univ Toronto, Toronto, ON, Canada

[23] Univ Michigan, Ann Arbor, MI 48109 USA

[24] Univ Pittsburgh, Pittsburgh, PA 15260 USA

[25] Univ Penn, Philadelphia, PA 19104 USA

[26] Royal Natl Hosp Rheumat Dis, Bath, Avon, England

[27] Univ Ontario, London, ON, Canada

[28] Natl Inst Med Sci, Mexico City, DF, Mexico

[29] Louisiana State Univ, Baton Rouge, LA 70803 USA

[30] Scleroderma Res Consultants, Litchfield, CT USA

[31] Duke Univ, Durham, NC 27706 USA

[32] Georgetown Univ, Washington, DC 20057 USA

[33] Barwon Hlth, Geelong, Vic, Australia

[34] Cumming Sch Med, Mitogen Adv Diagnost Lab, Calgary, AB, Canada

来源：

ANNALS OF THE RHEUMATIC DISEASES | 2019年 / 78卷 / 06期

基金：

澳大利亚国家健康与医学研究理事会; 加拿大健康研究院;

关键词：

SUDDEN CARDIAC DEATH; AMERICAN-COLLEGE; DISEASE-ACTIVITY; TASK-FORCE; CONDUCTION DISTURBANCES; GASTROINTESTINAL-TRACT; EUROPEAN-ASSOCIATION; INITIAL VALIDATION; ACTIVITY CRITERIA; DIGITAL ISCHEMIA;

D O I：

10.1136/annrheumdis-2018-214764

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Objective We sought to develop the first Damage Index (DI) in systemic sclerosis (SSc). Methods The conceptual definition of 'damage' in SSc was determined through consensus by a working group of the Scleroderma Clinical Trials Consortium (SCTC). Systematic literature review and consultation with patient partners and non-rheumatologist experts produced a list of potential items for inclusion in the DI. These steps were used to reduce the items: (1) Expert members of the SCTC (n=331) were invited to rate the appropriateness of each item for inclusion, using a web-based survey. Items with >60% consensus were retained; (2) Using a prospectively acquired Australian cohort data set of 1568 patients, the univariable relationships between the remaining items and the endpoints of mortality and morbidity (Physical Component Summary score of the Short Form 36) were analysed, and items with p<0.10 were retained; (3) using multivariable regression analysis, coefficients were used to determine a weighted score for each item. The DI was externally validated in a Canadian cohort. Results Ninety-three (28.1%) complete survey responses were analysed; 58 of 83 items were retained. The univariable relationships with death and/or morbidity endpoints were statistically significant for 22 items, with one additional item forced into the multivariable model by experts due to clinical importance, to create a 23-item weighted SCTC DI (SCTC-DI). The SCTC-DI was predictive of morbidity and mortality in the external cohort. Conclusions Through the combined use of consensus and data-driven methods, a 23-item SCTC-DI was developed and retrospectively validated.

引用

页码：807 / 816

页数：10

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