Systemic lupus erythematosus (SLE) predominantly affects young individuals with potential to be productive members of society. SLE also significantly increases healthcare utilization with higher overall expenditures. Consequently, the burden of SLE impacts patients, their families, communities and society. More than 85% of the world’s population live in low to middle income countries (LMIC), usually in developing countries, where SLE has been associated with several unfavourable outcomes including higher disease activity, damage accrual, work disability and mortality.^{1 2} Health disparities and limited resources compounded by the increasing patient load and lack of trained lupus specialists (e.g. rheumatologists) significantly contribute to illness burden.^{3 4} Poor socioeconomic status (SES) and lack of access to healthcare, resulting in diagnostic delay and severe organ damage in minority groups or those in third world countries, are largely responsible for many of the observed disparities.

Mortality in patients with SLE is higher compared with that of the general population and developing countries with lower economic performance have worse SLE survival rates than developed countries.⁵ This high mortality rate is attributable to disease severity and lack of access to proper therapy. Several studies have shown lower SES is associated with reduced survival among SLE patients with end-stage renal disease.⁶ The crucial inequalities in access to newer effective SLE therapies further result in increased organ damage due to long term glucocorticoid use.⁷ Infection is also an important cause of mortality and morbidity in SLE particularly in low SES settings; for example, tuberculosis is a frequent cause of morbidity incurring additional healthcare costs in endemic areas which are also developing countries.⁷

The heterogeneity of manifestations and organ involvement in lupus pose an important barrier to its early recognition and management. Physician education and practical referral guidelines are crucial to ensure early access to competent and efficient healthcare, including continuity of care. The relative lack of trained lupus specialists in developing countries necessitates a closely coordinated and systematic networking relationship between non-specialists and specialists in the care of every lupus patient throughout the disease course. Patient education and empowerment, including self-help programmes, likewise lead to improved overall outcomes and better patient quality of life. Strategies for promoting and strengthening lupus education in resource-limited settings or developing countries include:

• Integrate and reinforce SLE in the undergraduate medical curriculum and residency training programmes

• Educate primary care physicians, nurse practitioners and physician assistants who are at the frontline of patient evaluation and assist them in deciding which patients need specialist care

• Conduct dedicated lupus clinics that actively deploy internal medicine or paediatric trainees (e.g. residents, interns and medical students)

• Set up structured programmes and dedicated clinics to seamlessly transition childhood-onset SLE patients to adult rheumatology, ensuring continuity of care

• Establish and maintain patient registries to achieve better understanding of lupus characteristics unique to the country or region, and inform public healthcare policies

• Strengthen international collaboration for lupus education and research

• Empower patients and reinforce patient self-help or peer-mentoring programmes and other support group projects

Finally, telehealth has had the most positive impact in helping underserved populations by providing better healthcare access, collaboration opportunities among medical disciplines caring for a lupus patient, increased patient adherence and reduced costs.

Indeed, as lupus patients gain increased and earlier access to competent and efficient healthcare and improve their quality of life, society stands to ultimately reap the benefits of a reduced burden of SLE.

References

1. Lim KK, Chan M, Navarra S, et al. Development and implementation of models of care for musculoskeletal conditions in middle-income and low-income asian countries. Best Pract Res Clin Rheumatol. 2016;30(3):398–419. doi: 10.1016/j.berh.2016.08.007.

2. Tikly M, Navarra SV. Lupus in the developing world--is it any different? Best Pract Res Clin Rheumatol. 2008;22(4):643–55. doi: 10.1016/j.berh.2008.05.003.

3. Kabadi S, Yeaw J, Bacani AK, et al. Healthcare resource utilization and costs associated with long-term corticosteroid exposure in patients with systemic lupus erythematosus. Lupus. 2018;27(11):1799–809. doi: 10.1177/0961203318790675.

4. Navarra SV, Zamora LD, Collante MTM. Lupus education for physicians and patients in a resource-limited setting. Clin Rheumatol. 2020;39(3):697–702. doi: 10.1007/s10067-019-04795-9.

5. Kandane-Rathnayake R, Golder V, Louthrenoo W, et al. Lupus low disease activity state and remission and risk of mortality in patients with systemic lupus erythematosus: a prospective, multinational, longitudinal cohort study. Lancet Rheumatol. 2022;4(12):e822-e30. doi: 10.1016/S2665-9913(22)00304-6.

6. Buie J, McMillan E, Kirby J, et al. Disparities in lupus and the role of social determinants of health: Current state of knowledge and directions for future research. ACR Open Rheumatol. 2023;5(9):454–64. doi: 10.1002/acr2.11590.

7. Mendoza-Pinto C, Etchegaray-Morales I, Ugarte-Gil MF. Improving access to SLE therapies in low and middle-income countries. Rheumatology (Oxford). 2023;62(Suppl 1):i30-i35. doi: 10.1093/rheumatology/keac530.

Learning Objectives At the end of this presentation participants will be able to:

• Describe the burden of SLE in low-middle income or developing countries

• Discuss the factors contributing to poor outcomes in resource-limited settings, and propose strategies to mitigate these factors

• Explain the importance of early diagnosis and treatment, access to efficient and coordinated healthcare, and physician and patient education in improving disease outcomes