Researchers of this multicenter study developed and validated LUPIN, a brief, self-administered questionnaire co-designed by patients and lupus specialists to assess systemic lupus erythematosus (SLE) disease activity and patient-reported outcomes. Across 34 centers in France and overseas territories, 444 adults with SLE (85% women, mean age 45; frequent joint [86%] and skin [72%] involvement; 35% prior nephritis) completed LUPIN and SF-36 before clinic visits. Physicians, blinded to patient responses, scored SLEDAI-2K and Physician Global Assessment (PhGA). Overall correlations between LUPIN and SLEDAI/PhGA were statistically significant but modest (r<0.39), strengthening in clinically active SLE (SLEDAI≥4; r=0.53, p<0.0001). LUPIN aligned more strongly with SF-36 domains for fatigue (r=0.65), pain (r=0.65), and physical function (r=0.69).
Discordance analyses showed that gaps between patient- and physician-assessed activity were largely driven by patient-reported fatigue and pain and were not explained by mechanical or central pain syndromes. The findings suggest LUPIN captures symptomatic burden underrepresented in traditional indices, offering a practical, scalable tool to enhance patient engagement, shared decision-making, and individualized monitoring.
Reference: Scherlinger M, Kleinmann JF, Folliasson A, et al. Development and validation of LUPIN: a patient-centred self-administered tool to assess disease activity and patient-reported outcomes in systemic lupus erythematosus. RMD Open. 2025;11(3):e006106. doi: 10.1136/rmdopen-2025-006106.
