Background/Purpose: Satisfaction with care (SC) is increasingly being used as a surrogate of QOC, with growing emphasis on optimizing SC/patient experience in health care. We previously reported higher disease activity in systemic lupus erythematosus (SLE) to be associated with better SC in a large International study with cross sectional data. However, health care systems differ across regions and countries which could impact SC. Herein, we aimed to study association of disease activity and SC with disease activity (SLEDAI and Treat to Target T2T) at baseline and longitudinally in a single center.

Methods: Baseline (Time 1) data on 147 consenting SLE patients, meeting ACR criteria, were used from the Rush Lupus data repository. Patients completed assessments of demographics, PROs (LupusPROv1.8 and MDHAQ) at routine clinic visits. Other data collected included disease duration, SLE medications, disease activity (SELENA-SLEDAI), Treat to Target category (T2T-Nonoptimal, Low disease activity state -LDAS, Remission on therapy [RONT] and Remission Off therapy [ROFT]), damage (SLICC-SDI/ACR) and other comorbidities. SC was measured using the LupusPRO SC domain items. Univariate and multivariate regression analyses was done, with SC as a dependent variable and demographics, disease activity/duration, comorbidities, and PROs (Lupus-PRO and MDHAQ) as independent variables.

We developed a conceptual model based on Time 1 data. Longitudinal (Time 2) paired data on T2T and SC were available for 72 patients. We performed univariate linear regression with SC at Time 2 as the dependent and ROFT (Yes/No) T2T Time 1 as the independent variable. P value of ≤0.05 was considered significant.

Results: Mean (SD) age was 43.8 (13.4) years; 90% were female. Median (IQR) SLEDAI was 2(4; 0-14) and SLEDAI was ≥ 4 in 35%. Current prednisone use was observed among 35% patients. T2T category distribution were: Non-Optimal 25%, LDAS 34%, RONT 18% and ROFT 22%. Mean (SD) SC was 86.9±26.8. Total SLEDAI was not correlated with SC.

On univariate analysis, Hispanic ethnicity, and LupusPRO domains of Lupus Medications, and Social Support were directly associated with SC while ROFT (Yes/No) status was inversely associated with SC. On multivariate analysis, LupusPRO-Social Support and ROFT remained independent predictors of SC cross-sectionally (Table 1).

Longitudinal analysis also showed ROFT status at T1 to be a predictor of lower SC at T2 (β -15.56, 95% CI -30.2, -0.92, p 0.038).

Conclusion: SLE Patients in remission off therapy have worse satisfaction with care (as compared to those without ROFT) both at baseline and longitudinally. It is plausible that greater interaction with the care providers or health care system due to either active disease or use of immunosuppressive medications contributes to greater SC among those not in remission off therapy. Satisfaction with care may not be an appropriate surrogate to use for QOC in the context of attainment of disease activity status.

Table 1: Predictors of Satisfaction with Care

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/paradoxical-relationship-between-disease-activity-and-satisfaction-with-care-in-lupus/