Abstract
POS1111 A CHARTER TO IMPROVE CARE FOR LUPUS
Annals of the rheumatic diseases, v 83(Suppl 1), pp 961-962
01 Jun 2024
Abstract
Background:Systemic lupus erythematosus (SLE) is a complex and heterogenous autoimmune disease characterised by periods of worsening symptoms, known as flares. Flares and long-term glucocorticoid (GC) therapy are both associated with increased risk of long-term damage. This significantly impacts health-related quality of life and increases emergency hospital visits and healthcare costs. The challenges facing SLE patients worldwide have garnered significant attention from patient groups and clinical experts, driving robust consensus work on their unmet needs [1,2,3]. Key challenges include poor recognition of symptoms, leading to delays in diagnosis, cycling between healthcare professionals, and receiving suboptimal care. Patient access to approved treatments for SLE also remains limited. The publication of updated EULAR recommendations for the management of SLE provides an opportunity for the lupus community to advocate for improved standards of care by championing their implementation. Key recommendations include GC-sparing approaches and early use of biological therapies to achieve remission or lower disease activity, preserve renal function, and reduce flares and organ damage.Objectives:To unite and empower patients, patient groups and healthcare professionals to advocate for improvements in the care and treatment received by people with SLE.Methods:Representatives from patient groups, professional organisations and the treatment community came together to develop a Patient Charter.Results:The Patient Charter identifies four principles of care and associated recommendations to improve care:Principle 1: I deserve recognition and understanding of early symptoms of SLE to drive timely, accurate diagnosis and assessment so that I can receive the best care available as soon as possible.Recommendations: Improve public, patient and clinical education on SLE; develop a standard list of diagnostic criteria and clinical investigation tools; implement referral pathways.Principle 2: I deserve access to information about my SLE, so I can play an active role in the management of my condition, minimise flares and reduce the impact of SLE on my life.Recommendations: Improve access to patient information and self-management tools; co-create interventions with SLE patients to improve their uptake.Principle 3: I deserve access to a coordinated multi-disciplinary care team who fully understands my condition and my experience, regardless of who am I or where I live.Recommendations: Ensure patient access to multi-disciplinary teams; implement personalised care plans for every patient; establish shared care infrastructure; adopt telehealth solutions.Principle 4: I deserve access to appropriate and comprehensive pharmacological and non-pharmacological care, which reduces the burden of my SLE and allows me to have a high quality of life for as long as possible.Recommendations: Encourage clinical trial participation; minimise or monitor GC use to the lowest possible dose; update and implement clinical guidelines.Conclusion:SLE places a significant burden on the lives of millions of people worldwide, significantly impacting a patient’s quality of life, mental health and relationships. It has a substantial impact on healthcare systems due to suboptimal disease management, and on society, through the loss of productivity caused by the debilitating long-term symptoms and impact of SLE. The principles and recommendations we have set out in this charter demonstrate the core elements of quality care that all people living with SLE should receive, regardless of health system or geography. We urge healthcare professionals, providers, health systems and policymakers around the world to swiftly implement SLE diagnosis and care guidelines which reflect these principles and ensure that the latest advancements and current approaches in SLE care reach the patients who need them.REFERENCES:[1] Cornet A et al. Lupus Science & Medicine. 2021 8(1), e000469[2] Tse, K et al. Lupus Science & Medicine. 2021 8(1), e000433[3] European Reference Network. 2018 https://reconnet.ern-net.eu/Acknowledgements:The Patient Charter was initiated by AstraZeneca to inform a discussion about what quality care should look like in the provision of SLE services. These principles were debated and refined during a discussion held on Thursday 7 July 2022, organised and funded by AstraZeneca. Nine experts from academic and patient organisations and a professional group discussed the value of establishing a Patient Charter as a potential starting point for discussions on how to improve SLE care. Writing and editing assistance, including preparation of a draft manuscript under the direction and guidance of the authors, incorporating author feedback, and manuscript submission, was provided by MHP Group and Fishawack Health. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.Disclosure of Interests:Marta Mosca AbbVie, AstraZeneca, Bristol Myers Squibb, Janssen and Lilly, AstraZeneca, AbbVie, GSK, Idorsia, Lilly and UCB, Idorsia, Jeanette Andersen AstraZeneca, Bristol Myers Squibb and Roche, AstraZeneca, Bayer, Biogen, Bristol Myers Squibb, Boehringer Ingelheim, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche and UCB, Patrick Wildman: None declared, Susan Manzi AstraZeneca, Exagen Diagnostics Inc, GSK, Lilly, Novartis, UCB, AbbVie, AstraZeneca and GSK, Zahir Amoura AstraZeneca, GSK, Novartis, and Roche, AstraZeneca, GSK, Novartis, Roche; Amgen, Kezar and Otsuka, Irene Bultink GSK and UCB, Odirlei André Monticielo AbbVie, Apsen, AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, Celltrion, GSK, Janssen, Novartis and UCB, AstraZeneca, GSK and Janssen, Sandra Navarra Astellas, AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis and Pfizer, Biogen, Biogen, GSK, Idorsia, Lilly and Novartis, Susanne Pettersson Novartis.
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- Title
- POS1111 A CHARTER TO IMPROVE CARE FOR LUPUS
- Creators
- M Mosca - University of PisaJ AndersenP Wildman - Lupus Foundation of AmericaS Manzi - Allegheny Health NetworkZ Amoura - Sorbonne UniversitéI BultinkO Monticielo - Universidade Federal do Rio Grande do SulS Navarra - University of Santo Tomas HospitalS Pettersson - Karolinska University Hospital
- Publication Details
- Annals of the rheumatic diseases, v 83(Suppl 1), pp 961-962
- Publisher
- BMJ Publishing Group LTD
- Resource Type
- Abstract
- Language
- English
- Academic Unit
- General Internal Medicine
- Other Identifier
- 991021934003404721