Consensus-based recommendations for the management of juvenile systemic sclerosis

Author:

Foeldvari Ivan1,Culpo Roberta2,Sperotto Francesca2,Anton Jordi3,Avcin Tadej4,Baildam Eileen5,Boros Christina6,Chaitow Jeffrey7,Constantin Tamas8,Kasapcopur Ozgur9,Knupp Feitosa de Oliveira Sheila10,Pilkington Clarissa11,Toplak Natasa4,van Royen Annet12,Saad Magalhaes Claudia13,Vastert Sebastiaan J1415,Wulffraat Nico1415,Zulian Francesco2ORCID

Affiliation:

1. Hamburger Zentrum für Kinder- und Jugendrheumatologie, Schoen Clinic, Hamburg-Eilbek, Germany

2. Department of Woman’s and Child’s Health, University of Padova, Padua, Italy

3. Hospital Sant Joan de Déu, University of Barcelona, Barcelona, Spain

4. Department of Allergy, Rheumatology and Clinical Immunology, University Children’s Hospital, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia

5. Clinical and Academic Paediatric and Adolescent Rheumatology Unit, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK

6. Rheumatology, Women’s and Children’s Hospital, University of Adelaide, Adelaide, Australia

7. Rheumatology, The Children's Hospital Westmead, Australia, Sydney

8. 2nd Department of Pediatrics, Semmelweis Hospital, Budapest, Hungary

9. Department of Pediatrics, Cerrahpasa Medical School, Istanbul University-Cerrahpasa, Istanbul, Turkey

10. Pediatric Rheumatology Unit, Instituto de Puericultura e Pediatria Martagão Gesteira, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil

11. Centre for Adolescent Rheumatology, Institute of Child Health University College London, London, UK

12. Paediatric Immunology and Rheumatology, Wilhelmina Children's Hospital, Utrecht, The Netherlands

13. Department of Paediatrics, Faculdade de Medicina de Botucatu, Sao Paulo, Brazil

14. Department of Paediatric Rheumatology, Wilhelmina Children's Hospital, Utrecht, The Netherlands

15. The European Reference Network RITA

Abstract

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 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.

Funder

European Agency for Health and Consumers

Publisher

Oxford University Press (OUP)

Subject

Pharmacology (medical),Rheumatology

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