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Sayna Norouzi, MD, discusses results from a pair of trials examining QoL in patients with lupus from ERA 2025.
A pair of cross-sectional studies presented at the 62nd European Renal Association (ERA 2025) Congress shed new light on the underappreciated burden of lupus nephritis (LN) beyond clinical metrics, focusing on patient-reported quality of life and distress tolerance.
“In our study, we realized that a lot of patients are reporting fatigue, severe enough not to be able to work, and we are talking about these patients that are in their 40s, 50s, even 30s. And this is huge, right?,” said Sayna Norouzi, MD, director of the Glomerular Disease Clinic and Polycystic Kidney Disease Clinica at Loma Linda University Medical Center, in an interview. “So, if you're not able to work, if you're on disability, if you feel like the fatigue is severe enough that you're not able to finish your studies, that's something that I want to bring more attention and awareness to it and say, ‘What about these symptoms throughout the trial? Should we ask about these things? Should we pay more attention to patient reported outcomes for our patients with lupus nephritis?'.”
In the first study, 35 adults with biopsy-confirmed LN completed the LupusPRO questionnaire, a disease-specific health-related quality of life (HRQoL) tool. The cohort was 85.7% female, with a mean age of 40.9 years. Topline results suggested pain (mean score: 56), fatigue (61), and body image (54) were the most negatively impacted domains. Despite this, satisfaction with care remained high (88) among participants.
Upon analysis, disease activity was indicated as a key driver of HRQoL impairment. Patients with severe disease reported significantly lower physical health scores (mean, 51 vs. 76; P = .038), and higher disease activity independently predicted worse fatigue (β = –0.417, P = .013) and physical health (β = –0.474, P = .003). Additionally, employment status was also linked to disease activity and quality of life, with full-time employed patients having superior physical health (mean: 89; P = .009) and fatigue scores (mean: 96; P = .026).
The second study assessed distress tolerance, which investigators defined as the ability to withstand negative emotional states. It included 20 LN patients using the Distress Tolerance Scale (DTS). Upon analysis, median DTS scores showed no significant differences by sex, disease severity, or employment status. Female patients had significantly higher SLEDAI scores than males (8.6 vs. 2.4; P = .012), but this did not translate to differences in distress sensitivity. Regression analyses revealed no significant predictors of distress sensitivity, although the small sample size likely limited statistical power.
Taken together, these findings underscore how clinical and demographic factors play a role in shaping physical quality of life in LN, psychological resilience may be influenced by less easily quantifiable variables. For more on the clinical and psychosocial dimensions of LN, watch our full interview with Norouzi, who is also the director of the GlomCon Glomerular Disease Fellowship Program and serves as an associate professor at Loma Linda University, from ERA 2025.
Relevant disclosures for Norouzi include Calliditas, Novartis, Otsuka, Novo Nordisk, GSK, Amgen, Aurinia, and Boehringer Ingelheim.