Application and performance of disease activity indices proposed for patients with systemic sclerosis in an international cohort of patients with juvenile systemic sclerosis

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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

Klotsche, Jens (författare): Leibniz Inst, German Rheumatism Res Ctr, Berlin, Germany.;Deutsch Rheuma Forschungszentrum DRFZ, Paediat Rheumatol & Hlth Serv Res, Charitepl 1, D-10117 Berlin, Germany.

Torok, Kathryn S. (författare): Univ Pittsburgh, Childrens Hosp Pittsburgh, Pittsburgh, PA USA.

Kasapcopur, Ozgur (författare): Istanbul Univ Cerrahpasa, Cerrahpasa Med Sch, Dept Pediat Rheumatol, Istanbul, Turkiye.

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Adrovic, Amra (författare): Istanbul Univ Cerrahpasa, Cerrahpasa Med Sch, Dept Pediat Rheumatol, Istanbul, Turkiye.

Terreri, Maria Teresa (författare): Univ Fed Sao Paulo, Sao Paulo, Brazil.

Sakamoto, Ana Paula (författare): Univ Fed Sao Paulo, Sao Paulo, Brazil.

Katsicas, Maria (författare): Hosp Pediat JP Garrahan, Buenos Aires, Argentina.

Sztajnbok, Flavio (författare): Univ Estado, Rio De Janeiro, Brazil.

Marrani, Edoardo (författare): Meyer Childrens Hosp, Florence, Italy.

Sifuentes-Giraldo, Alberto (författare): Univ Hosp Ramon y Cajal, Madrid, Spain.

Stanevicha, Valda (författare): Riga Stradins Univ, Univ Children Hosp, Dept Pediat, Riga, Latvia.

Anton, Jordi (författare): Univ Barcelona, Hosp St Joan de Deu, Pediat Rheumatol, Barcelona, Spain.

Feldmann, Brian (författare): Hosp Sick Children, SickKids, Toronto, ON, Canada.

Kostik, Mikhail (författare): St Petersburg State Pediat Med Univ, St Petersburg, Russia.

Nemcova, Dana (författare): Charles Univ Prague, Prague, Czech Republic.

Santos, Maria Jose (författare): Hosp Garcia de Orta, Serv Reumatol, Almada, Portugal.

Appenzeller, Simone (författare): Univ Estadual Campinas, Sch Med Sci, Campinas, Brazil.

Avcin, Tadej (författare): Univ Childrens Hosp, Univ Med Ctr Ljubljana, Ljubljana, Slovenia.

Battagliotti, Cristina (författare): Hosp Ninos Dr Orlando Alassia, Santa Fe, Argentina.

Berntson, Lillemor, 1957- (författare): Uppsala universitet,Pediatrisk inflammations- och metabolismforskning samt barnhälsa

Bica, Blanca (författare): Univ Fed Rio de Janeiro, Hosp Univ Clementino Fraga Filho HUCFF, Rio De Janeiro, Brazil.

Brunner, Juergen (författare): Med Univ Innsbruck, Dept Pediat, Pediat Rheumatol, Innsbruck, Austria.

Eleftheriou, Despina (författare): Great Ormond St Hosp Children NHS Fdn Trust, London, England.

Harel, Liora (författare): Tel Aviv Univ, Schneider Childrens Med Ctr, Petah Tiqwa, Israel.

Horneff, Gerd (författare): Asklepios Klin Sankt Augustin, St Augustin, Germany.

Kallinich, Tilmann (författare): Charite, Berlin, Germany.;German Rheumatism Res Ctr Berlin, Berlin, Germany.

Minden, Kirsten (författare): Leibniz Inst, German Rheumatism Res Ctr, Berlin, Germany.;Charite, Berlin, Germany.;German Rheumatism Res Ctr Berlin, Berlin, Germany.

Nielsen, Susan (författare): Rigshosp, Copenhagen, Denmark.

Patwardhan, Anjali (författare): Univ Missouri, Columbia, MO USA.

Helmus, Nicola (författare): Schon Klin Hamburg Eilbek, Hamburg Ctr Pediat & Adolescent Rheumatol, Hamburg, Germany.

Foeldvari, Ivan (författare): Schon Klin Hamburg Eilbek, Hamburg Ctr Pediat & Adolescent Rheumatol, Hamburg, Germany.

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Leibniz Inst, German Rheumatism Res Ctr, Berlin, Germany;Deutsch Rheuma Forschungszentrum DRFZ, Paediat Rheumatol & Hlth Serv Res, Charitepl 1, D-10117 Berlin, Germany. Univ Pittsburgh, Childrens Hosp Pittsburgh, Pittsburgh, PA USA. (creator_code:org_t)

Sage Publications, 2023
2023
Engelska.
Ingår i: Journal of Scleroderma and Related Disorders. - : Sage Publications. - 2397-1983 .- 2397-1991. ; 8:3, s. 183-191

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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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Application and performance of disease activity indices proposed for patients with systemic sclerosis in an international cohort of patients with juvenile systemic sclerosis

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