Consensus-based recommendations for the management of juvenile systemic sclerosis
Foeldvari, Ivan; Culpo, Roberta; Sperotto, Francesca; Anton, Jordi; Avcin, Tadej; Baildam, Eileen; Boros, Christina; Chaitow, Jeffrey; Constantin, Tamas; Kasapcopur, Ozgur; Knupp Feitosa de Oliveira, Sheila; Pilkington, Clarissa; Toplak, Natasa; van Royen, Annet; Saad Magalhaes, Claudia; Vastert, Sebastiaan J; Wulffraat, Nico; Zulian, Francesco
(2021) Rheumatology (Oxford, England), volume 60, issue 4, pp. 1651 - 1658
(Article)
Abstract
Juvenile systemic sclerosis (JSSc) is a rare disease of childhood and currently no international consensus exists with regard to its assessment and treatment. This SHARE (Single Hub and Access point for paediatric Rheumatology in Europe) initiative, based on expert opinion informed by the best available evidence, provides recommendations for the
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assessment and treatment of patients with JSSc with a view to improving their outcome. Experts focused attention not only on the skin assessment but also on the early signs of internal organ involvement whose proper treatment can significantly affect the long-term outcome. A score for disease severity is proposed in order to perform a structured assessment of outcome over time but a validation in a wider patient population is recommended. Finally, a stepwise treatment approach is proposed in order to unify the standard of care throughout Europe with the aim to reduce morbidity and mortality in this disease.
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Keywords: assessment, juvenile systemic sclerosis, outcome, recommendations, scleroderma, severity score, treatment, Rheumatology, Pharmacology (medical)
ISSN: 1462-0324
Publisher: Oxford University Press
Note: Publisher Copyright: © 2020 The Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.
(Peer reviewed)