Extrarenal symptoms associate with worse quality of life in patients enrolled in the AMP RA/SLE Lupus Nephritis Network
Authors: Carlucci Philip M , Preisinger Katherine , Deonaraine Kristina K , Zaminski Devyn , Dall'Era Maria , Gold Heather T , Kalunian Kenneth , Fava Andrea , Belmont H Michael , Wu Ming , Putterman Chaim , Anolik Jennifer , Barnas Jennifer L , Furie Richard , Diamond Betty , Davidson Anne , Wofsy David , Kamen Diane , James Judith A , Guthridge Joel M , Apruzzese William , Rao Deepak , Weisman Michael H , Izmirly Peter M , Buyon Jill , Petri Michelle ,   The Accelerating Medicines Partnership in RA/SLE Network, Anolik Jennifer , Tabechian Darren , Thiele Ralf , Hossler Jennifer , Boyce Brendan , Meednu Nida , Rangel-Moreno Javier , Ritchlin Christopher , Bykerk Vivian , Donlin Laura , Goodman Susan , Ivashkiv Lionel , Pernis Alessandra , DiCarlo Ed , Orange Dana , Carrino John , Nwawka Oganna (Kenny) , Yoshimi Endo , Satija Rahul , Ivashkiv Lionel , Darnell Robert , Figgie Mark , McNamara Michael , Moreland Larry W , McGeachy Mandy J , Kolls Jay , Wise Aaron , Cordle Andrew , Gregersen Peter , Horowitz Diane , Filer Andrew D , Turner Jason , Adams Holly , Pitzalis Costantino , Kelly Stephen , Hands Rebecca , Brenner Michael , Todd Derrick , Wei Kevin , Rao Deepak , Mizoguchi Fumitaka , Holers V Michael , Deane Kevin D , Seifert Jennifer A , Banda Nirmal K , Firestein Gary S , Boyle David , Weisman Michael H , Ben-Artzi Ami , Forbess Lindsy , Gravallese Ellen , Salomon-Escoto Karen , Perlman Harris , Mandelin Arthur , Bacalao Emily , Parks Deborah , Atkinson John , Bathon Joan , Matteson Eric , Bridges Louis , Hughes Laura B , Fox David , Ike Robert , Petri Michelle , Lee Chun-Hao , Fine Derek , Monroy-Trujillo Manny , Anolik Jennifer , Shah Ummara , Weisman Michael , Ishimori Mariko , Buyon Jill P , Clancy Robert M , Izmirly Peter , Belmont Michael , Wu Ming , Bornkamp Nicole , Putterman Chaim , Der Evan , Goilav Beatrice , Jordan Nicole , Schwartz Daniel , Pullman James , Wofsy David , Smilek Dawn , Tosta Patti , Diamond Betty , Kretzler Matthias , Berthier Celine C , Woodle F Steve , Hildeman Dave , Brenner Michael , Rao Deepak , Robinson William , Nolan Garry , Gonzales Veronica , Brenner Michael , Rao Deepak , Wei Kevin , Lederer Jim , Keegan Joshua , Chicoine Adam , Liu Yanyan , Watts Gerald , Hacohen Nir , Arazi Arnon , Lieb David , Eisenhaure Thomas , Tuschl Thomas , Apruzzese (NIAMS William , Utz P J , Rohani-Pichavant Mina , Gupta Rohit , Maecker Holden , James Judith A , Guthridge Joel M , Sargent Maria , Raychaudhuri Soumya , Lee Yvonne , Slowikowski Kamil , Fonseka Chamith , Zhang Fan , Guitierrez-Arcelus Maria , Buschman Justine , Chi Jennifer , Mao Su-Yau , Serrate-Sztein Susana , Wang Yan , Chen Quan , Peyman John , Goldmuntz Ellen , Dunn Patrick 
Published: March 2024

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 &gt;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.