What are the challenges of lupus in Asia? We examine insights into its prevalence, unique clinical manifestations, and the need for personalised healthcare approaches.
Lupus is a chronic autoimmune disorder where the body’s immune system mistakenly attacks its own tissues and cells. One of the most common types of lupus is Systemic Lupus Erythematosus (SLE), in which the disease is system-wide, causing widespread inflammation and tissue damage in multiple organs. The severity of SLE can range from mild to life-threatening. The complex interactions among genetic disposition, environmental risk factors, and hormonal status contribute to the variations in the clinical manifestation of SLE, thus making it often problematic or dependent on clinical expertise and immunological findings.
Numerous indications suggest that SLE is more severe in patients of Asian ancestry than in Europeans. They have more organ damage, which is associated with increased morbidity and mortality. In this article, we will explore lupus, the prevailing challenges in Asia, its common symptoms, the unique and severe clinical manifestations in Asians, and how healthcare professionals can effectively contribute to better management and outcomes.
The Burden of Lupus in Asia
The overall prevalence of SLE across Asian-Pacific countries ranged from 4.3- 45.3 per 100,000 people. Compared to North America and Europe, the incidence of SLE ranged from 1.5- 7.4 per 100,000. One study investigating prevalence data from 24 Asian countries found that prevalence generally falls within 30-50 per 100,000 population. One survey showed a higher prevalence of 70 in Shanghai, a range of 40-58 in Hong Kong, Singapore, and Malaysia cohorts, and a lower prevalence of 3.2-19.3 in India and Japan.
Lupus care in Asia faces significant challenges, including delayed diagnoses, inadequate reimbursement, and limited access to biologic therapies. Additionally, the diversity in clinical phenotypes, cultural backgrounds, infection risks, and comorbidities influence healthcare professionals’ therapeutic decisions.
Common Symptoms of Lupus
In Asia, delayed diagnosis and lack of disease awareness of lupus remains a significant unmet need, particularly in economically disadvantaged areas. These are some common symptoms to look out for:
- Skin rashes, particularly a butterfly-shaped rash on the face across the cheeks and nose
- Fatigue
- Fever
- Joint pain
- Stiffness and swelling
- Photosensitivity where skin lesions appear or worsen with sun exposure
- Fingers and toes that turn white or blue due to stress or cold
- Neuropsychiatric symptoms such as headaches, dizziness, depression, memory problems, and, in more severe cases, seizures or psychosis
Clinical Manifestations Unique to Asian Populations
In addition to the aforementioned symptoms, certain symptoms are more commonly observed among Asian patients and are less observed in Caucasians. Besides 90% of people who have lupus are women, lupus is also more prevalent among racial/ethnic minority groups and often presents with a more severe disease. In a California Lupus Surveillance Project studying residents in San Francisco County, California, from 2007- 2009, they found that Asian/Pacific Islanders had increased hematologic manifestations (Prevalence Ratio: 1.07), higher risk of developing lupus nephritis (Hazard Ratio: 4.3), thrombocytopenia (Hazard Ratio: 2.3), antiphospholipid syndrome (Hazard Ratio 2.5).
In another study, the authors reviewed literature on the epidemiology of SLE in Asia. The study revealed that the common features of clinical manifestations in Asians involve musculoskeletal and cutaneous systems. The most frequent hematologic abnormality is leukopenia. Discoid rash, serositis, and neurological symptoms are less frequently seen. Renal involvement is a significant concern as it is frequently present at the beginning and throughout the disease progression. Similar to the California study, they also reported that lupus nephritis is more common in Asians, where nearly two-thirds of the studies reported a 40-70% incidence, compared to Caucasian populations, where nephritis is observed in just 10-40% of cases.
Treatment Outcomes and Variability in Asian Lupus Patients
Due to genetic differences, response to treatments may also differ in Asian patients compared to Caucasian patients. Medications may metabolise differently and affect their side effects, which can influence treatment efficacy and tolerance. For example, the first line of treatment for lupus nephritis patients is a combination of glucocorticoids and mycophenolate mofetil (MMF) or cyclophosphamide (CYC) for their immunosuppressive effect. However, a meta-analysis of 56 treatment trials reported that, unlike non-Asians, the use of MMF did not significantly reduce infective complications compared to CYC in Asian patients, suggesting a difference in drug metabolism and lower tolerance to higher doses of MMF. Therefore, it is important to consider the patient’s ethnicity, disease severity, and individual response to medication for a personalised treatment.
Enhancing Healthcare Support for Lupus Patients in Asia
Healthcare professionals are instrumental in ensuring early diagnosis of lupus to facilitate early intervention and treatment for better patient outcomes. These are some ways healthcare professionals can help enhance patient management and care:
Early Diagnosis and Awareness
Understand the early symptoms of lupus, particularly those unique to Asians, to facilitate early and accurate diagnosis.
Personalised Treatment Plans
Take into account the patient’s ethnicity, specific symptoms, and comorbidities. These genetic and individual differences will likely affect disease progression and response to treatment, so treatment plans have to be personalised. Continuous monitoring and adjusting treatment regimens are also important to manage lupus effectively.
Access to Advanced Therapies and Reimbursement
Glucocorticoids as a treatment for SLE may be cheaper and more effective in alleviating inflammation than other treatments, but the risk of irreversible organ damage should not be overlooked. Healthcare professionals can help with improving access to biologic therapies and newer treatments to enhance the quality of life for lupus patients in Asia. Treatments are also costly, and reimbursement policies in many Asian countries are inadequate. Healthcare professionals can work with agencies towards better reimbursement policies and support for these costly treatments.
Multidisciplinary Care
Lupus affects various organs and systems, so a collaborative approach involving rheumatologists, nephrologists, dermatologists, neurologists, and mental health professionals can provide comprehensive care. A collaborative team approach helps address the wide range of symptoms and complications associated with lupus.
Patient Education and Support
Educate patients about their condition, the risks of other clinical manifestations, treatment options, and the risks involved in each treatment option, and advise on lifestyle adjustments that can improve adherence to treatment and self-management. Support groups and counselling should also be available to help patients cope with the psychological impacts of living with a chronic disease.
Support Outreach and Awareness Programs
These initiatives are crucial for educating the public and other medical professionals about lupus’s realities, including fatigue’s debilitating nature and other non-visible symptoms. By enhancing understanding, these programs can help reduce the stigma often associated with chronic illnesses, where symptoms like fatigue are misinterpreted as laziness. Effective outreach can improve early diagnosis rates and encourage compassionate support for those affected.
Research and Collaboration
Support and encourage participation in clinical research and collaborations across regions to enhance understanding of the disease’s ethnic variations and lead to better therapeutic strategies.
Conclusion: Advancing Lupus Care and Understanding in Asia
Lupus is a formidable challenge, particularly in Asia, due to its severe manifestations and the diverse needs of the population affected. By fostering early diagnosis, personalised care, improved access to treatments, and comprehensive support systems, healthcare professionals can significantly mitigate the impact of the disease. Enhancing patient education and fostering international research collaborations are vital for advancing our understanding and treatment of lupus. With committed efforts from all sectors of the healthcare community, we can aspire to improve the lives of those suffering from lupus in Asia and beyond.
References
- Fatoye, F., Gebrye, T., & Mbada, C. (2022). Global and regional prevalence and incidence of systemic lupus erythematosus in low-and-middle-income countries: A systematic review and meta-analysis. Rheumatology International, 42(12), 2097-2107. https://doi.org/10.1007/s00296-022-05183-4
- Osio-Salido, E., & Manapat-Reyes, H. (2010). Epidemiology of systemic lupus erythematosus in Asia. Lupus, 19(12), 1365-1373. https://doi.org/10.1177/0961203310374305
- Mysler, E., Monticielo, O. A., Al-Homood, I. A., Lau, C. S., Hussein, H., & Chen, Y.-H. (2024). Opportunities and challenges of lupus care in Latin America, the Middle East, and Asia-Pacific: A call to action. Modern Rheumatology. https://doi.org/10.1093/mr/roae001
- Maningding, E., Dall’Era, M., Trupin, L., Murphy, L. B., & Yazdany, J. (2020). Racial and ethnic differences in the prevalence and time to onset of manifestations of systemic lupus erythematosus: The California Lupus Surveillance Project. Arthritis Care & Research, 72, 622-629. https://doi.org/10.1002/acr.23887
- Petri, M., Fang, C., & Goldman, D. W. (2023). East-Asian lupus nephritis in the Hopkins Lupus Cohort. Rheumatology Immunology Research, 4(3), 157-161. https://doi.org/10.2478/rir-2023-0022
- Medical Channel Asia. (2024, February 5). Patients’ Perspective | Chloe – Selena Gomez, Street Dance, and Lupus [Video]. YouTube. https://youtu.be/n89NTlGxeoE?feature=shared
