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Application and performance of disease activity indices proposed for patients with systemic sclerosis in an international cohort of patients with juvenile systemic sclerosis
J. Klotsche, KS. Torok, O. Kasapcopur, A. Adrovic, MT. Terreri, AP. Sakamoto, M. Katsicas, F. Sztajnbok, E. Marrani, A. Sifuentes-Giraldo, V. Stanevicha, J. Anton, B. Feldmann, M. Kostik, D. Nemcova, MJ. Santos, S. Appenzeller, T. Avcin, C....
Status neindexováno Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu časopisecké články
- Publikační typ
- časopisecké články MeSH
OBJECTIVES: Juvenile systemic sclerosis is a rare childhood disease. Three disease activity indices have been published for adult patients with systemic sclerosis: the European Scleroderma Study Group Index, a modified version of the European Scleroderma Study Group Index and the revised European Scleroderma Trials and Research index. The objective of this study was to determine the feasibility and performance of the three disease activity indices in a prospectively followed cohort of patients with juvenile systemic sclerosis. METHODS: The analysis cohort was selected from the prospective international inception cohort enrolling juvenile systemic sclerosis patients. The correlation of the disease activity indices with the physicians' and the patients' global assessment of disease activity was determined. The disease activity indices were compared between patients with active and inactive disease. Sensitivity to change between 6- and 12-month follow-up was investigated by mixed models. RESULTS: Eighty percent of the 70 patients had a diffuse cutaneous subtype. The revised European Scleroderma Trials and Research index was highly correlated with the physician-reported global disease activity/parents-reported global disease activity (r = 0.74/0.64), followed by the European Scleroderma Study Group activity index (r = 0.61/0.55) and the modified version of the European Scleroderma Study Group activity index (r = 0.51/0.43). The disease activity indices significantly differed between active and inactive patients. The disease activity indices showed sensitivity to change between 6- and 12-month follow-up among patients who improved or worsened according to the physician-reported global disease activity and the parents-reported global disease activity. CONCLUSION: Overall, no disease activity score is superior to the other, and all three scores have limitations in the application in juvenile systemic sclerosis patients. Furthermore, research on the concept of disease activity and suitable scores to measure disease activity in patients with juvenile systemic sclerosis is necessary in future.
Asklepios Klinik Sankt Augustin Sankt Augustin Germany
Charité University Medicine and German Rheumatism Research Center Berlin Berlin Germany
Charles University Prague Czech Republic
Department of Pediatrics Pediatric Rheumatology Medical University Innsbruck Innsbruck Austria
Department of Pediatrics Riga Stradins University University Children Hospital Riga Latvia
Department of Women's and Children's Health Uppsala University Uppsala Sweden
German Rheumatism Research Center A Leibniz Institute Berlin Germany
Great Ormond Street Hospital for Children NHS Foundation Trust London UK
Hamburg Centre for Pediatric and Adolescent Rheumatology Schön Klinik Hamburg Eilbek Hamburg Germany
Hospital de Niños Dr Orlando Alassia Santa Fe Argentine
Hospital de Pediatria J P Garrahan Buenos Aires Argentine
Meyer Children's Hospital Florence Italy
Pediatric Rheumatology Hospital Sant Joan de Déu Universitat de Barcelona Barcelona Spain
Rigshospitalet Copenhagen Denmark
Saint Petersburg State Pediatric Medical University Saint Petersburg Russia
Schneider Children's Medical Center Tel Aviv University Petah Tikva Israel
School of Medical Science State University of Campinas Campinas Brazil
Serviço de Reumatologia Hospital Garcia de Orta Almada Portugal
SickKids The Hospital for Sick Children Toronto ON Canada
Universidade do Estado Rio de Janeiro Brazil
Universidade Federal de São Paulo Sao Paulo Brazil
University Children's Hospital University Medical Center Ljubljana Ljubljana Slovenia
University Hospital Ramón y Cajal Madrid Spain
University of Missouri Columbia MO USA
University of Pittsburgh Children's Hospital of Pittsburgh Pittsburgh PA USA
Citace poskytuje Crossref.org
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- $a OBJECTIVES: Juvenile systemic sclerosis is a rare childhood disease. Three disease activity indices have been published for adult patients with systemic sclerosis: the European Scleroderma Study Group Index, a modified version of the European Scleroderma Study Group Index and the revised European Scleroderma Trials and Research index. The objective of this study was to determine the feasibility and performance of the three disease activity indices in a prospectively followed cohort of patients with juvenile systemic sclerosis. METHODS: The analysis cohort was selected from the prospective international inception cohort enrolling juvenile systemic sclerosis patients. The correlation of the disease activity indices with the physicians' and the patients' global assessment of disease activity was determined. The disease activity indices were compared between patients with active and inactive disease. Sensitivity to change between 6- and 12-month follow-up was investigated by mixed models. RESULTS: Eighty percent of the 70 patients had a diffuse cutaneous subtype. The revised European Scleroderma Trials and Research index was highly correlated with the physician-reported global disease activity/parents-reported global disease activity (r = 0.74/0.64), followed by the European Scleroderma Study Group activity index (r = 0.61/0.55) and the modified version of the European Scleroderma Study Group activity index (r = 0.51/0.43). The disease activity indices significantly differed between active and inactive patients. The disease activity indices showed sensitivity to change between 6- and 12-month follow-up among patients who improved or worsened according to the physician-reported global disease activity and the parents-reported global disease activity. CONCLUSION: Overall, no disease activity score is superior to the other, and all three scores have limitations in the application in juvenile systemic sclerosis patients. Furthermore, research on the concept of disease activity and suitable scores to measure disease activity in patients with juvenile systemic sclerosis is necessary in future.
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