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

Johnson S, Soowamber M, Fransen J, Khanna D, Van Den Hoogen F, Baron M, Matucci-Cerinic M, Denton C, Medsger T, Carreira P, Riemekasten G, Distler J, Gabrielli A, Steen V, Chung L, Silver R, Varga J, Müller-Ladner U, Vonk M, Walker U, Wollheim F, Herrick A, Furst D, Czirjak L, Kowal-Bielecka O, Del Galdo F, Cutolo M, Hunzelmann N, Murray C, Foeldvari I, Mouthon L, Damjanov N, Kahaleh B, Frech T, Assassi S, Saketkoo L, Pope J (2017)


Publication Type: Journal article

Publication year: 2017

Journal

Pages Range: 1-9

DOI: 10.1080/03009742.2017.1299793

Abstract

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.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.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).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).

Authors with CRIS profile

Involved external institutions

University of Manchester GB United Kingdom (GB) University of Belgrade / Универзитет у Београду RS Serbia (RS) Hospital Universitario 12 de Octubre ES Spain (ES) University of Texas Health Science Center at Houston (UTHealth) US United States (USA) (US) Western University CA Canada (CA) Tulane University US United States (USA) (US) University of Utah US United States (USA) (US) University of Toledo US United States (USA) (US) University of Paris 5 - René Descartes / Université Paris V René Descartes FR France (FR) Hamburger Zentrum für Kinder- und Jugendrheumatologie DE Germany (DE) Royal Free Hospital GB United Kingdom (GB) Ospedale San Martino (IRCCS AOU) IT Italy (IT) University of Leeds GB United Kingdom (GB) Medical University of Bialystok PL Poland (PL) University of Pécs / Pécsi Tudományegyetem HU Hungary (HU) University of California Los Angeles (UCLA) US United States (USA) (US) Skåne University Hospital / Skånes universitetssjukhus SE Sweden (SE) Universitätsspital Basel CH Switzerland (CH) Radboud University Nijmegen Medical Centre / Radboudumc of voluit Radboud Universitair Medisch Centrum (UMC) NL Netherlands (NL) Kerckhoff-Klinik DE Germany (DE) Northwestern University US United States (USA) (US) Medical University of South Carolina (MUSC) US United States (USA) (US) Stanford University US United States (USA) (US) Georgetown University US United States (USA) (US) Università Politecnica delle Marche (UNIVPM) / Marche Polytechnic University IT Italy (IT) Universität zu Lübeck DE Germany (DE) University of Pittsburgh US United States (USA) (US) University College London (UCL) GB United Kingdom (GB) Università degli Studi di Firenze / University of Florence IT Italy (IT) McGill University CA Canada (CA) Universität zu Köln DE Germany (DE) University of Michigan US United States (USA) (US) University of Toronto CA Canada (CA)

How to cite

APA:

Johnson, S., Soowamber, M., Fransen, J., Khanna, D., Van Den Hoogen, F., Baron, M.,... Pope, J. (2017). There is a need for new systemic sclerosis subset criteria. A content analytic approach. Scandinavian Journal of Rheumatology, 1-9. https://dx.doi.org/10.1080/03009742.2017.1299793

MLA:

Johnson, S., et al. "There is a need for new systemic sclerosis subset criteria. A content analytic approach." Scandinavian Journal of Rheumatology (2017): 1-9.

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