Rheumatology
Systemic Lupus Erythematosus @ ACR
Quality of Life in Systemic Lupus Erythematosus
QOL in SLE is influenced by a wide range of factors. As rheumatologists, we often prioritize controlling disease activity to prevent organ damage and improve QOL. Patients, however, frequently report that symptoms such as pain, fatigue, and cognitive difficulties, often described as “brain fog,” have the greatest impact on their daily lives, interfering with work, school, relationships, and routine activities. These symptoms can reflect underlying disease activity but are also shaped by psychosocial, environmental, and social determinants of health. Together, these factors profoundly influence the lived experience of SLE and the ability to manage this complex condition. Several sessions and posters at the recent ACR Convergence 2025 meeting explored these broad influences on QOL, offering valuable insights into a meaningful area of research and an integral aspect of patients’ daily lives.
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The session titled “From Frustration to Confidence: Promoting Medication Adherence in Rheumatology,” featuring Kai Sun, MD, MS, RhMSUS, and Giya Harry, MD, MSc, MPH, and moderated by Rachel Randell, MD, MS, and Jinoos Yazdany, MD, MPH, addressed patient- and health system–level challenges contributing to nonadherence. Barriers ranged from financial burden and polypharmacy to complex regimens, side effects, and beliefs about medications. Presenters emphasized a patient-centered approach, asking about adherence in a supportive, nonjudgmental manner to uncover barriers and identify solutions. Building trust, improving communication, and leveraging technology such as mobile apps were highlighted as strategies to enhance adherence and, ultimately, QOL.
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Another session at ACR Convergence 2025 titled “More Than the Sum of Parts: A Roadmap to Target Social Risk Factors in Rheumatology,” led by Candace Feldman, MD, MPH, ScD, Kimberly DeQuattro, MD, Shivani Garg, MD, PhD, and myself, reviewed data on how health-related social needs affect outcomes in rheumatic diseases, including SLE and rheumatoid arthritis. Dr Garg shared her experience with integrating social work into rheumatology clinics to address patient needs in real time, aiming to provide wraparound services that improve adherence, prevent flares, and enhance QOL. Screening for social risk factors was presented as a critical step toward holistic care.
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There were several posters at this year’s ACR Convergence meeting linking QOL to varied influences, including financial insecurity and discrimination, as well as disease activity. For example, Heather Gold, PhD, MA, and her team found that financial insecurity and everyday discrimination were strongly associated with worse patient-reported outcomes across physical, cognitive, and emotional domains, independent of disease activity (poster 1919). These findings underscore the need to address nonclinical factors to improve well-being.
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Further, in poster 2384, Bernard Rubin, DO, MPH, and collaborators evaluated the relationship between QOL and 2 disease activity measures: the blood-based Lupus Disease Activity Index (L-DAI) and the clinician-assessed hybrid Systemic Lupus Erythematosus Disease Activity Index (hSLEDAI). Among 30 patients followed longitudinally, higher L-DAI and hSLEDAI scores were associated with lower health-related QOL, reinforcing the impact of inflammation on QOL.
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Also at ACR Convergence 2025, Sara Lieber, MD, MS, and her research group examined physical activity and sedentary behavior in patients with SLE aged 50 and older (poster 2426). Physical activity was significantly associated with less fatigue and greater social role engagement, while sedentary behavior showed no significant associations. These findings suggest that promoting physical activity, even in older adults, may improve QOL.
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Finally, Amanda Eudy, PhD, and investigators explored self-care priorities using a modified Whole Health Self-Assessment in poster 0363. Among 295 patients, domains such as rest, movement/exercise, nutrition, and purpose were most frequently prioritized. Patients with persistent type 2 SLE symptoms (ie, fatigue, pain, and brain fog despite remission of inflammation) had worse scores across multiple domains. These insights informed the development of a whole health program to enhance self-care and QOL through education, peer support, and goal setting.
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These sessions and studies highlight the multifaceted nature of QOL in SLE. While controlling disease activity remains essential, as rheumatologists, we should appreciate that many factors, including pain, fatigue, social determinants, and daily living circumstances, impact our patients’ well-being. Clinicians may not be able to address every factor directly, but awareness is vital. We can counsel patients on the importance of physical activity or refer them to mental health, physical therapy, or social support services when needed. In my clinical and research experience, partnering with patients to address what truly impacts their lives, including disease manifestations, complex medication regimens, pain, fatigue, and social challenges, is essential to improving outcomes in SLE.
Eudy A, Clowse M, Burshell D, et al. Assessing whole health needs in systemic lupus erythematosus [poster 0363] [session: Patient outcomes, preferences, & attitudes poster I]. Poster presented at: ACR Convergence 2025; October 24-29, 2025; Chicago, IL.
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Feldman C, DeQuattro K, Garg S, Rogers J. More than the sum of parts: a roadmap to target social risk factors in rheumatology [session 28T66]. Session presented at: ACR Convergence 2025; October 24-29, 2025; Chicago, IL.
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Gold H, Li Y, Izmirly P, et al. Financial insecurity and discrimination are associated with patient-reported qualify of life in patients with SLE [poster 1919] [session: Health services research poster III]. Poster presented at: ACR Convergence 2025; October 24-29, 2025; Chicago, IL.
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Lieber S, Nagpal N, Nguyen J, et al. Physical activity patterns and health-related quality of life in middle-aged and older adults with systemic lupus erythematosus [poster 2426] [session: Systemic lupus erythematosus – diagnosis, manifestation, & outcomes poster III]. Poster presented at: ACR Convergence 2025; October 24-29, 2025; Chicago, IL.
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Randell R, Yazdany J, Sun K, Harry G. From frustration to confidence: promoting medication adherence in rheumatology [session 28T53]. Session presented at: ACR Convergence 2025; October 24-29, 2025; Chicago, IL.
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Refai RH, Hussein MF, Abdou MH, Abou-Raya AN. A case-control study on health-related quality of life of systemic lupus erythematosus patients. Sci Rep. 2024;14(1):5234. doi:10.1038/s41598-024-55833-9
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Rubin B, Sore R, Munroe M, et al. Patient-reported quality of life in SLE: association with biomarker-derived activity index (L-DAI) and hSLEDAI in a prospective cohort [poster 2384] [session: Systemic lupus erythematosus – diagnosis, manifestations, & outcomes poster III]. Poster presented at: ACR Convergence 2025; October 24-29, 2025; Chicago, IL.
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