Background/Purpose: Systemic lupus erythematosus (SLE) is a complex, multisystem autoimmune disease with variable clinical manifestations and an unpredictable waxing and waning disease course impacting patient health-related quality of life (HRQoL). The objective of this analysis is to portray the self-perceived burden of illness by assessing patterns of self-reported disease activity and HRQoL over the course of 6 months.

Methods: A longitudinal cohort of employed SLE patients in the U.S meeting the following inclusion criteria were recruited between Dec 2010 and March 2011 through a patient advocacy association and the Harris Chronic Illness Panel: ≥18 years old, self-reported SLE diagnosis, and ≥1 SLE flare in prior 3 months requiring medical attention (physician/ER/hospital encounter or taking SLE medications). SLE patients completed a baseline (BL) and six monthly follow-up (FU) surveys online. Monthly surveys included assessments of self-perceived SLE disease activity (scale: 0 (no activity) to 10 (most activity); mild: 0-3, moderate: 4-6 & severe: 7-10), Lupus Impact Tracker (LIT; scale: 0 (low) to 100 (high); a 10-item HRQoL tool assessing disease impact on pain, fatigue, ability to perform daily activities, etc), self-reported flares & symptoms and work/productivity (data not shown).

Results: 272 SLE patients (mean age: 40.9 yrs; female: 96%; Caucasian: 78%; had at least college education: 63%) who completed the BL and >=1 FU survey during the 6-month follow-up period were included in the analysis. Time since first onset of SLE symptoms and time since SLE diagnosis were 12.5yrs and 7.8yrs respectively. At BL, mean disease activity score was 5.9; patients reporting different levels of severity of lupus disease activity at BL and each of the monthly FUs were clustered consistently over time as follows – Mild: 15-16%, moderate: 40-42%, severe: 43-45%. For all patients, at BL, mean LIT score was 49.3, and monthly FUs ranged between 44.3 & 48.7. Fatigue, pain, and difficulty concentrating were identified by over 55%, 55%, and 30% of patients respectively as occurring at least ‘most or all of the time’ at every evaluation period. LIT scores for patients reporting mild, moderate and severe disease activity across the individual surveys were in the range of: 30.2-40.9, 49.7-59.7 and 56.8-75.2 respectively. Mean LIT scores statistically significantly (p<.001) correlated to disease activity scores at BL and monthly assessments (pearson correlation coefficients range: 0.57-0.67).

Conclusion: Overwhelming majority of SLE patients in the study consistently rated their disease activity to be moderate-to-severe over the course of 6-months, and it significantly correlated with HRQoL measured by LIT. While patient self-assessment of disease activity may differ from physician’s clinical assessment, consistently high patient disease severity reported by the study cohort highlights the perceived disease burden. Incorporating patient perspective in clinical decision making may be important to consider in managing patients optimally and alleviate their burden of illness.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/self-reported-disease-activity-and-health-related-quality-of-life-in-a-longitudinal-cohort-of-patients-with-systemic-lupus-erythematosus/