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There is a need for new systemic sclerosis subset criteria. A content analytic approach

Johnson, S; Soowamber, M.; Fransen, J.; Khanna, Dinesh; van den Hoogen, F. H. J.; Baron, M A; Matucci-Cerinic, M.; Denton, C. P.; Medsger, T. and Carreira, P., et al. (2017) In Scandinavian Journal of Rheumatology p.1-9
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 22.5 years, with a... (More)

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 22.5 years, 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).

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@article{e3308de7-c972-4db5-9ff4-46f162881763,
  abstract     = {<p>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 22.5 years, 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).</p>},
  author       = {Johnson, S and Soowamber, M. and Fransen, J. and Khanna, Dinesh and van den Hoogen, F. H. J. and Baron, M A and Matucci-Cerinic, M. and Denton, C. P. and Medsger, T. and Carreira, P. and Riemekasten, G. and Distler, J. H. W. and Gabrielli, A and Steen, Virginia and Chung, Lorinda and Silver, R and Varga, John and Müller-Ladner, Ulf and Vonk, M. and Walker, Ulrich and Wollheim, F. and Herrick, A. and Furst, Daniel E and Czirjak, L. and Kowal-Bielecka, Otylia and Del Galdo, Francesco and Cutolo, M and Hunzelmann, N. and Murray, C. and Foeldvari, Ivan and Mouthon, Luc and Damjanov, N and Kahaleh, Bashar and Frech, Tracy M and Assassi, S. and Saketkoo, L. and Pope, J},
  issn         = {0300-9742},
  language     = {eng},
  month        = {10},
  pages        = {1--9},
  publisher    = {Taylor & Francis},
  series       = {Scandinavian Journal of Rheumatology},
  title        = {There is a need for new systemic sclerosis subset criteria. A content analytic approach},
  url          = {http://dx.doi.org/10.1080/03009742.2017.1299793},
  year         = {2017},
}