Universität zu Köln

Johnson, S. R., Soowamber, M. L., Fransen, J., Khanna, D., Van den Hoogen, F., Baron, M., Matucci-Cerinic, M., Denton, C. P., Medsger, T. A., Jr., Carreira, P. E., Riemekasten, G., Distler, J., Gabrielli, A., Steen, V., Chung, L., Silver, R., Varga, J., Mueller-Ladner, U., Vonk, M. C., Walker, U. A., Wollheim, F. A., Herrick, A., Furst, D. E., Czirjak, L., Kowal-Bielecka, O., Del Galdo, F., Cutolo, M., Hunzelmann, N., Murray, C. D., Foeldvari, I., Mouthon, L., Damjanov, N., Kahaleh, B., Frech, T., Assassi, S., Saketkoo, L. A. and Pope, J. E. (2018). There is a need for new systemic sclerosis subset criteria. A content analytic approach. Scand. J. Rheumatol., 47 (1). S. 62 - 71. ABINGDON: TAYLOR & FRANCIS LTD. ISSN 1502-7732

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Abstract

Objectives. Systemic sclerosis (SSc) is heterogenous. The objectives of this study were to evaluate the purpose, strengths and limitations of existing SSc subset criteria, and identify ideas among experts about subsets. Methods. We conducted semi-structured interviews with randomly sampled international SSc experts. The interview transcripts underwent an iterative process with text deconstructed to single thought units until a saturated conceptual framework with coding was achieved and respondent occurrence tabulated. Serial cross-referential analyses of clusters were developed. Results. Thirty experts from 13 countries were included; 67% were male, 63% were from Europe and 37% from North America; median experience of 22.5years, with a median of 55 new SSc patients annually. Three thematic clusters regarding subsetting were identified: research and communication; management; and prognosis (prediction of internal organ involvement, survival). The strength of the limited/diffuse system was its ease of use, however 10% stated this system had marginal value. Shortcomings of the diffuse/limited classification were the risk of misclassification, predictions/generalizations did not always hold true, and that the elbow or knee threshold was arbitrary. Eighty-seven percent use more than 2 subsets including: SSc sine scleroderma, overlap conditions, antibody-determined subsets, speed of progression, and age of onset (juvenile, elderly). Conclusions. We have synthesized an international view of the construct of SSc subsets in the modern era. We found a number of factors underlying the construct of SSc subsets. Considerations for the next phase include rate of change and hierarchal clustering (e.g. limited/diffuse, then by antibodies).

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Johnson, S. R. UNSPECIFIED UNSPECIFIED UNSPECIFIED Soowamber, M. L. UNSPECIFIED UNSPECIFIED UNSPECIFIED Fransen, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Khanna, D. UNSPECIFIED UNSPECIFIED UNSPECIFIED Van den Hoogen, F. UNSPECIFIED UNSPECIFIED UNSPECIFIED Baron, M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Matucci-Cerinic, M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Denton, C. P. UNSPECIFIED UNSPECIFIED UNSPECIFIED Medsger, T. A., Jr. UNSPECIFIED UNSPECIFIED UNSPECIFIED Carreira, P. E. UNSPECIFIED UNSPECIFIED UNSPECIFIED Riemekasten, G. UNSPECIFIED UNSPECIFIED UNSPECIFIED Distler, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Gabrielli, A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Steen, V. UNSPECIFIED UNSPECIFIED UNSPECIFIED Chung, L. UNSPECIFIED UNSPECIFIED UNSPECIFIED Silver, R. UNSPECIFIED UNSPECIFIED UNSPECIFIED Varga, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Mueller-Ladner, U. UNSPECIFIED UNSPECIFIED UNSPECIFIED Vonk, M. C. UNSPECIFIED UNSPECIFIED UNSPECIFIED Walker, U. A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Wollheim, F. A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Herrick, A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Furst, D. E. UNSPECIFIED UNSPECIFIED UNSPECIFIED Czirjak, L. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kowal-Bielecka, O. UNSPECIFIED UNSPECIFIED UNSPECIFIED Del Galdo, F. UNSPECIFIED UNSPECIFIED UNSPECIFIED Cutolo, M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Hunzelmann, N. UNSPECIFIED UNSPECIFIED UNSPECIFIED Murray, C. D. UNSPECIFIED UNSPECIFIED UNSPECIFIED Foeldvari, I. UNSPECIFIED UNSPECIFIED UNSPECIFIED Mouthon, L. UNSPECIFIED UNSPECIFIED UNSPECIFIED Damjanov, N. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kahaleh, B. UNSPECIFIED UNSPECIFIED UNSPECIFIED Frech, T. UNSPECIFIED UNSPECIFIED UNSPECIFIED Assassi, S. UNSPECIFIED UNSPECIFIED UNSPECIFIED Saketkoo, L. A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Pope, J. E. UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-204160
DOI:	10.1080/03009742.2017.1299793
Journal or Publication Title:	Scand. J. Rheumatol.
Volume:	47
Number:	1
Page Range:	S. 62 - 71
Date:	2018
Publisher:	TAYLOR & FRANCIS LTD
Place of Publication:	ABINGDON
ISSN:	1502-7732
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language CLASSIFICATION CRITERIA; CLINICAL-FEATURES; EARLY DISEASE; SCLERODERMA; SURVIVAL; INVOLVEMENT; VARIABILITY; MORTALITY; PROFILE Multiple languages Rheumatology Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/20416