Background/Purpose: Disease remission is the ideal treatment target in SLE; when remission cannot be reached, the lowest possible disease activity state should be targeted. Available definitions of remission and low disease activity state (LLDAS) are based on physician’s driven clinical data. Little data exist on the effect of remission and LLDAS on the patients’ perception of the disease. Our purpose was to evaluate the relationship between the available definitions of remission and LLDAS and the patient’s perspective on quality of life(QOL) and disease burden.

Methods: This is a cross-sectional analysis from our database that enrolls adult patients who fulfilled the 1997 ACR criteria for SLE. Disease activity was evaluated with the SELENA-SLEDAI while organ damage with the SLICC/DI. The remission status at last clinic visits was defined according to the European consensus criteria (DORIS), the LLDAS was defined according to the Asian Pacific Lupus Consortium definition. The QOL was assessed by the validated Italian version of the Short-Form-36 (SF36), the disease burden was evaluated by Italian version of the Lupus Impact tracker (LIT) and fatigue by the FACIT score. Patients included in this analysis are categorized according to the categories: clinical remission off treatment (ROFT), LLDAS, active disease.

Results: A total of 194 patients were included in this analysis (96.3% Caucasian, 92.2% female, mean age 45.5±13.4 years, mean disease duration 14.4 ±10.1years); disease activity was globally low (median SLEDAI: 2, IQR 0-4); 122 patients (62.9%) were on LLDAS, 33 (17.01%) were on ROFT, 41 (21.13%) had some degree of disease activity. SF-36 and LIT scores according to the three groups are reported in table. Patients in remission off treatment have lower disease burden as compared to those with active disease status but the difference didn’t’ reach statistical significance (p=0.3). Though LIT showed lower value also among LLDAS than active disease patients, this was not statistically significant (p=0.8). Fatigue was significantly lower in the remission group with respect to the active (p=0.01) while no differences were observed in SF-36 scores.

Conclusion: in this cohort, PROs seem to be moderately influenced by the disease status as defined according to the clinical definition of remission and LLDAS. The small sample size, the slightly higher damage in the active group, and none to mild variation in disease activity in the three groups could have appeased the association. On the other hand, these results underly the fact that disease burden and quality of life are related to several multifaceted aspects of the disease that are not accurately captured by physician driven instruments. Further prospective studies on larger cohorts are necessary to confirm these data.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/do-remission-and-low-disease-activity-state-go-hand-in-hand-with-patients-perception-of-disease-burden-and-quality-of-life-in-systemic-lupus-erythematosus/