A charter to improve care for systemic lupus erythematosus.

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.