Lupus & antiphospholipid syndrome

Development and validation of LUPIN: a patient-centred self-administered tool to assess disease activity and patient-reported outcomes in systemic lupus erythematosus

RMD OpenPublished Validation study

Authors' conclusion

LUPIN effectively captures symptom domains that are often under-represented in conventional clinical indices and reflects the lived burden of disease in SLE.

Study context

Population
Patients with systemic lupus erythematosus (SLE), 34 centres in metropolitan France and overseas territories (85% women, mean age 45 years)
Participants
444 patients
Comparison
LUPIN vs physician assessments and SF-36
Outcome
Correlations and discordances between patient (LUPIN) and physician (SLEDAI-2K, PhGA) assessments
Methodological detailsmulticentre, physicians blinded to patients' responses
  • Multicentre
  • Physicians blinded to patients' responses

Performance

As reported in the abstract

LUPIN vs SLEDAI/Physician Global Assessment (PhGA): statistically significant but modest

r<0.39

LUPIN vs SF-36 fatigue

r=0.65

LUPIN vs SF-36 pain

r=0.65

LUPIN vs SF-36 physical function

r=0.69

Further findings

Correlation of LUPIN with clinical SLEDAI in active SLE (SLEDAI≥4; n=153) (subgroup)

LUPIN vs clinical SLEDAI, p<0.0001
r=0.53

Original publication

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. Published 23 September 2025. doi:10.1136/rmdopen-2025-006106

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