- Poster presentation
- Open Access
SHARE – workpackage 5 : evidence based recommendations for diagnosis and treatment of childhood-onset systemic lupus erythematosus
- Noortje Groot1, 2, 3,
- Nienke de Graeff3,
- Tadej Avcin4,
- Brigitte Bader-Meunier5,
- Paul Brogan6,
- Pavla Dolezalova7,
- Brian Feldman8,
- Isabelle Kone-Paut9,
- Pekka Lahdenne10,
- Alberto Martini11,
- Liza McCann1,
- Seza Ozen12,
- Clarissa Pilkington6,
- Angelo Ravelli11,
- Annet van Royen3,
- Bas Vastert3,
- Nico Wulffraat3,
- Sylvia Kamphuis2 and
- Michael Beresford1
https://doi.org/10.1186/1546-0096-12-S1-P109
© Groot et al; licensee BioMed Central Ltd. 2014
- Published: 17 September 2014
Keywords
- Systemic Lupus Erythematosus
- Access Point
- Rheumatic Disease
- Online Survey
- Standard Operating Procedure
Introduction
Childhood-onset systemic lupus erythematosus (cSLE) is a rare multisystem autoimmune disease that often leads to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physician’s experience. Consequently, treatment regimens differ throughout Europe. In 2012, a European initiative called SHARE (Single Hub and Access point for paediatric Rheumatology in Europe) was launched to optimize and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases such as cSLE.
Objectives
To develop evidence-based recommendations for diagnosis and treatment of cSLE.
Methods
Evidence based recommendations were developed using the European League Against Rheumatism (EULAR) standard operating procedure. An expert committee, consisting of paediatric rheumatologists from across Europe with expertise in cSLE, defined search terms for the systematic literature review. Two independent experts scored articles for validity and level of evidence. Through an online survey, experts evaluated recommendations derived from the literature. The recommendations were discussed at a consensus meeting using the nominal group technique1. Recommendations were accepted if more than 80% agreement was reached.
Results
Table 1
Recommendations regarding: | Number |
|---|---|
Diagnosis: | |
Classification | 3 |
Laboratory features | 2 |
Access to other specialities | 2 |
Comorbidities (growth/MAS/ heri-ditary conditions) | 3 |
NP-SLE | |
Acknowledgement of necessary research | 2 |
1 | |
Treatment | |
General | 2 |
Haematological involvement | 1 |
Lupus Nephritis (Class III/IV/V) | 8 |
Compliance | 1 |
NP-SLE | 2 |
Conclusion
The SHARE initiative provides recommendations for diagnosis and treatment for cSLE and thereby facilitates improvement and uniformity of care throughout Europe. Currently, a similar process is going on to add further guidelines including those on treatment and holistic care for PRD patients. As a final result, SHARE will provide standards of minimal care for different PRDs, including cSLE.
Disclosure of interest
None declared.
Authors’ Affiliations
Copyright
This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
