Despite advances in understanding and managing systemic lupus erythematosus (SLE), patients continue to face significant challenges in receiving optimal care and support. The concept of a universal SLE patient charter, outlining the rights, needs and expectations of SLE patients, has emerged as a potential solution to address these challenges. However, the development and implementation of such a charter present several significant hurdles.

Firstly, there is a need for consensus among healthcare professionals, patient advocacy groups, researchers, and policymakers, regarding the content and scope of the charter. Standardizing care and efforts to ensure that the charter reflects evidence practices are crucial components in the development and implementation of a universal SLE patient charter. This requires robust communication and collaboration to guarantee that the charter encompasses the diverse needs and perspectives of the global SLE community.

Secondly, the inherent heterogeneity of SLE poses a challenge in creating a charter that can accommodate the unique experiences and requirements of individual patients. SLE manifests differently in each patient, making it crucial to strike a balance between specificity and inclusivity within the charter.¹

Thirdly, the charter must address the barriers to access and equity in SLE care. Issues such as disparities in healthcare access, limited availability of specialized healthcare professionals, and high treatment costs need to be considered and addressed within the charter.^2–6

In addition, the charter should emphasize the importance of patient education and empowerment to facilitate informed decision-making and self-management. Furthermore, the implementation and enforcement of the charter pose practical challenges. Adequate resources and infrastructure, along with legal and regulatory frameworks, are required to support the implementation of charter principles across different healthcare systems and jurisdictions. Additionally, the charter should encourage the integration of research and data collection efforts to advance our understanding of SLE. Despite these challenges, a universal SLE patient charter holds great potential in improving the quality of care and outcomes for SLE patients globally. It can serve as a guiding document to promote patient-centered care, raise awareness, and advocate for the rights of SLE patients.

References

1. Parra Sánchez AR, et al. Treat-to-target in systemic lupus erythematosus: advancing towards its implementation. Nat Rev Rheumatol. 2022 Mar;18(3):146–157. doi: 10.1038/s41584-021-00739-3.

2. Peschken CA. Health disparities in systemic lupus erythematosus. Rheum Dis Clin North Am. 2020 Nov;46(4):673–683. doi: 10.1016/j.rdc.2020.07.010.

3. Zirkzee EJ, et al. Health care in systemic lupus erythematosus (SLE): the patient’s perspective. Clin Rheumatol. 2014 Sep;33(9):1279–87. doi: 10.1007/s10067-014-2595-1.

4. Williams EM, et al. Effective self-management interventions for patients with lupus: potential impact of peer mentoring. Am J Med Sci. 2017 Jun;353(6):580–592. doi: 10.1016/j.amjms.2017.01.011.

5. Mendoza-Pinto C, et al. Improving access to SLE therapies in low and middle-income countries. Rheumatology (Oxford). 2023 Mar 29;62(Suppl 1):i30-i35. doi: 10.1093/rheumatology/keac530.

6. Scofield L, et al. Employment and disability issues in systemic lupus erythematosus: a review. Arthritis Rheum. 2008 Oct 15;59(10):1475–9. doi: 10.1002/art.24113.

Learning Objectives

• Recognize the potential of a universal SLE patient charter to address lupus care

• Identify significant barriers in developing and implementing the charter, including stakeholder consensus and defining key elements

• Appreciate the need to accommodate the heterogeneity of SLE and address barriers to access and equity in care

• Understand the importance of patient education and empowerment and the practical challenges of implementing and enforcing the charter across healthcare systems and jurisdictions