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Observational Study
. 2025 Mar 1;64(3):1193-1200.
doi: 10.1093/rheumatology/keae189.

Extrarenal symptoms associate with worse quality of life in patients enrolled in the AMP RA/SLE Lupus Nephritis Network

Philip M Carlucci  1 , Katherine Preisinger  1 , Kristina K Deonaraine  1 , Devyn Zaminski  1 , Maria Dall'Era  2 , Heather T Gold  1 , Kenneth Kalunian  3 , Andrea Fava  4 , H Michael Belmont  1 , Ming Wu  1 , Chaim Putterman  5 , Jennifer Anolik  6 , Jennifer L Barnas  6 , Richard Furie  7 , Betty Diamond  7 , Anne Davidson  7 , David Wofsy  2 , Diane Kamen  8 , Judith A James  9 , Joel M Guthridge  9 , William Apruzzese  10 , Deepak Rao  11 , Michael H Weisman  12 , Peter M Izmirly  1 , Jill Buyon  1 , Michelle Petri  4 ; Accelerating Medicines Partnership in RA/SLE Network
Collaborators, Affiliations
Observational Study

Extrarenal symptoms associate with worse quality of life in patients enrolled in the AMP RA/SLE Lupus Nephritis Network

Philip M Carlucci et al. Rheumatology (Oxford). .

Abstract

Objective: Lupus nephritis (LN) can occur as an isolated component of disease activity or be accompanied by diverse extrarenal manifestations. Whether isolated renal disease is sufficient to decrease health-related quality of life (HRQOL) remains unknown. This study compared Patient-Reported Outcomes Measurement Information System 29-Item (PROMIS-29) scores in LN patients with isolated renal disease to those with extrarenal symptoms to evaluate the burden of LN on HRQOL and inform future LN clinical trials incorporating HRQOL outcomes.

Methods: A total of 181 LN patients consecutively enrolled in the multicentre multi-ethnic/racial Accelerating Medicines Partnership completed PROMIS-29 questionnaires at the time of a clinically indicated renal biopsy. Raw PROMIS-29 scores were converted to standardized T scores.

Results: Seventy-five (41%) patients had extrarenal disease (mean age 34, 85% female) and 106 (59%) had isolated renal (mean age 36, 82% female). Rash (45%), arthritis (40%) and alopecia (40%) were the most common extrarenal manifestations. Compared with isolated renal, patients with extrarenal disease reported significantly worse pain interference, ability to participate in social roles, physical function, and fatigue. Patients with extrarenal disease had PROMIS-29 scores that significantly differed from the general population by >0.5 SD of the reference mean in pain interference, physical function, and fatigue. Arthritis was most strongly associated with worse scores in these three domains.

Conclusion: Most patients had isolated renal disease and extrarenal manifestations associated with worse HRQOL. These data highlight the importance of comprehensive disease management strategies that address both renal and extrarenal manifestations to improve overall patient outcomes.

Keywords: Lupus nephritis; PROMIS-29; SLE; health-related quality of life.

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Figures

Figure 1.
Figure 1.
Map of the clinical SLEDAI domains affecting each of the 75 patients with extrarenal clinical disease activity. Shaded green represents the presence of that manifestation
See this image and copyright information in PMC

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