Abstract
ObjectiveDefinitions of remission in systemic lupus erythematosus (SLE; DORIS (1A/1B/2A/2B)), disease activity assessments and patient-reported outcome measures (PROMs) are useful in shared decision making between patients with SLE and physicians. We used longitudinal registry data from well-characterized Swedish patients with recent-onset SLE to explore potential correlations between DORIS status or disease activity, and PROMs.MethodsPatients from the Clinical Lupus Register in North-Eastern Gothia, Sweden, who fulfilled the 1982 American College of Rheumatology and/or the 2012 Systemic Lupus International Collaborating Clinics classification criteria without prior organ damage, were enrolled at diagnosis. Data on treatments, serology, remission status (DORIS), disease activity (SLE Disease Activity Index-2000 (SLEDAI-2K)) and PROMs (quality of life: EuroQoL-5 Dimensions (EQ-5D); pain intensity, fatigue and well-being: visual analog scale (VAS) 0–100 mm) were collected during rheumatology clinic visits at months 0 (diagnosis), 6, 12, 24, 36, 48 and 60. Correlations were assessed using Pearson correlation and/or beta regression coefficients.ResultsA total of 41 patients were enrolled (median age = 39 years, 80% female, 85% white). Achievement of DORIS 1A and 2A (neither of which includes serology) significantly correlated with all PROMs (EQ-5D: p ≤ 0.02; pain: p = 0.0001; fatigue: p = 0.0051; well-being: p < 0.0001). Disease activity measures were correlated with VAS pain intensity (p < 0.03) and VAS well-being (p < 0.04).ConclusionsOur findings illustrate the importance of the interplay between remission, disease activity assessments and PROMs. PROMs may be a useful tool in clinical practice, being administered prior to patient visits to streamline clinical care.
Highlights
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects multiple organs and can result in diverse symptoms, including arthralgia, skin rash and fatigue.[1,2] SLE has a significant impact on patients’ daily functioning and requires prolonged care.[2]
Univariate logistic regression analysis showed that patients with SLE achieving remission (DORIS 1A or 2A) had higher mean EuroQoL-5 Dimensions (EQ-5D) indices compared to those not achieving remission (p 1⁄4 0.01; regression coefficient 1⁄4 0.09; Table 2)
No significant relationship was observed between remission (DORIS 1B or 2B) and EQ-5D indices over the study period
Summary
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects multiple organs and can result in diverse symptoms, including arthralgia, skin rash and fatigue.[1,2] SLE has a significant impact on patients’ daily functioning and requires prolonged care.[2]. Patient-reported outcome measures (PROMs) provide information on disease activity, health-related variables and treatment from the patient’s perspective. EuroQoL-5 Dimensions (EQ-5D) is an established generic HRQoL measure validated in rheumatoid arthritis and SLE; EQ-5D measures health status on five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression.[5,6] Combining PROMs with clinical measures provides a broader overall evaluation of the patient’s disease state. Such an approach may facilitate effective treatment communication and shared decision making between patients with SLE and their health-care providers.[1]. The current study used longitudinal registry data from well-characterized Swedish patients with recentonset SLE to investigate potential correlations between DORIS status and PROMs (primary objective) and between disease activity assessments and PROMs (secondary objective)
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