Patient perspectives in lupus management

Since this episode was released for the first time in May 2023, two recent studies of note have been published, providing an important update on patients’ experiences of SLE in Latin America and Europe. These publications are summarisedbelow (full publications are available online):

Study Summary:The Patient Experience of SLE in Latin America

Quintana R, et al. Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey. Clin Rheumatol. 2025 Dec 5. doi: 10.1007/s10067-025-07867-1.

This 2024 GLADEL network survey of 1,180 Latin American patients reveals a profound "well-being gap" in Systemic Lupus Erythematosus (SLE) care. While 80.9% receive antimalarials and two-thirds feel "controlled," clinical stability masks a pervasive psychosocial crisis.

The data shows that 60% of patients suffer from anxiety or depression, and 62.1% report significant professional or educational setbacks. Physical burdens remain high, including joint involvement (71.4%), skin issues (47.4%), and life-altering renal complications (37.5%). Furthermore, 43.7% noted negative impacts on emotional and sexual health.

Despite heavy reliance on corticosteroids (55.7%), uptake of newer biologics remains low at 11.1%. These findings serve asa critical call for Latin American healthcare systems to adopt a "Treat-to-Target" model. This approach must move beyond mere symptom management to prioritize the restoration of a patient’s social, mental, and professional agency.

Study Summary:Unmet Needs of SLE Patients in Europe

Cornet A, et al. Experiences and unmet needs of persons living with systemic lupus erythematosus in Europe: LupusEurope's 2024 Swiss knife survey. Autoimmun Rev. 2025 Jul 31;24(8):103838. doi: 10.1016/j.autrev.2025.103838.

The 2024 "Swiss Knife" survey by Lupus Europe reveals a significant "perception gap" among 4,525 patients across 36 countries. While 66.5% believe their lupus is "under control," only 7.9% remained flare-free over five years, indicating a normalization of chronic symptoms.

Several unmet needs remain. The study found that fatigue is the most prevalent symptom (84.9%) but remains the least addressed in clinical plans. Joint and muscle pain also remain high. Patients seek remission or low disease activity, yet 32% lack access to essential non-pharmacological therapies like physiotherapy. Over 31% report insufficient consultation time, often leaving discontent unvoiced. Finaly, adoption of digital health tools remains low at 14.3%.

The survey concludes that European SLE management must shift toward patient-centered care, prioritizing better physician-patient communication and digital health integration to address the disease’s true physical and psychological burden.

In this episode Dr Raquel Faria is speaking with Jeanette Andersen (Chair of Lupus Europe) and Professors Ricard Cervera and Maria Dall'Era.

You can visit the Lupus Europe website here: ⁠https://www.lupus-europe.org/⁠

Disclaimer: ‘During Lupus Academy podcast episodes, participants may refer to off label use of medicines for patients with lupus. Lupus Academy does not make any recommendations about using a medicine outside the terms of its approved licence for use.’