Review
A charter to improve care for systemic lupus erythematosus
M. Mosca1, J. Andersen2, P. Wildman3, S. Manzi4, Z. Amoura5, I. Bultink6, O.A. Monticielo7, S. Navarra8, S. Pettersson9
- Department of Clinical and Experimental Medicine, University of Pisa, Italy. marta.mosca@unipi.it
- Lupus Europe Patient Advisory Network, Lupus Europe, Brussels, Belgium.
- Advocacy & Government Relations, Lupus Foundation of America and World Lupus Federation, Washington DC, USA.
- Lupus Center of Excellence, Autoimmunity Institute, Allegheny Health Network, Pittsburgh, USA.
- French National Reference Centre for Systemic Lupus Erythematosus, Pitié-Salpêtrière Hospital, Paris, France.
- Department of Rheumatology and Clinical Immunology, Amsterdam University Medical Center, Amsterdam, The Netherlands.
- Department of Internal Medicine, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil.
- Department of Rheumatology, University of Santo Tomas Hospital, Manila, Philippines.
- Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
CER17808
Review
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PMID: 39526503 [PubMed]
Received: 26/04/2024
Accepted : 09/07/2024
In Press: 11/11/2024
Abstract
OBJECTIVES:
To develop evidenced recommendations to allow the global systemic lupus erythematosus (SLE) advocacy community to effectively advocate for change and improve care for patients with SLE.
METHODS:
A Global Working Group consisting of representatives from patient advocacy groups, professional organisations, and the SLE healthcare community defined key areas of unmet need in patients with SLE. Targeted principles for each area of unmet need guided a literature review to investigate the current global situation, pre-existing advocacy efforts, and best practices from other therapy areas. The results from this literature review allowed the Working Group to develop recommendations to improve care for patients with SLE.
RESULTS:
Barriers faced by patients with SLE can stem from poor recognition of symptoms, which leads to delays in accurate diagnosis, cycling between different healthcare professionals, and inconsistencies in receiving optimal care. Patient access to approved treatments for SLE also remains limited. This Patient Charter, co-developed with a group of internationally recognised clinicians and patient advocates, sets out the minimum standard of care people living with SLE should expect and receive under 4 principles with distinct recommendations for change.
CONCLUSIONS:
The intention is to improve health outcomes by uniting and empowering patients, caregivers, patient groups, and healthcare professionals to advocate for reforms to healthcare practices for people living with SLE.
