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:
CreatorsEmailORCIDORCID Put Code
Johnson, S. R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Soowamber, M. L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fransen, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Khanna, D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Van den Hoogen, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Baron, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Matucci-Cerinic, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Denton, C. P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Medsger, T. A., Jr.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Carreira, P. E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Riemekasten, G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Distler, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gabrielli, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Steen, V.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Chung, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Silver, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Varga, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mueller-Ladner, U.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vonk, M. C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Walker, U. A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wollheim, F. A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Herrick, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Furst, D. E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Czirjak, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kowal-Bielecka, O.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Del Galdo, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cutolo, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hunzelmann, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Murray, C. D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Foeldvari, I.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mouthon, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Damjanov, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kahaleh, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Frech, T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Assassi, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Saketkoo, L. A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pope, J. E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
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:
KeywordsLanguage
CLASSIFICATION CRITERIA; CLINICAL-FEATURES; EARLY DISEASE; SCLERODERMA; SURVIVAL; INVOLVEMENT; VARIABILITY; MORTALITY; PROFILEMultiple languages
RheumatologyMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/20416

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