Changes in Quality of Life in the First 5 Years of Disease in a Multicenter Cohort of Patients With Systemic Lupus Erythematosus

Abstract

Objective. The Medical Outcomes Study Short Form 36 (SF-36) is recommended to assess quality of life (QOL) in systemic lupus erythematosus (SLE).The aim of the current study was to assess QOL over time in the first 5 years of a multicenter inception cohort of patients with SLE.Methods. An inception SLE cohort was assembled according to a standardized protocol between 2000 and 2012. In addition to clinical and laboratory assessments, patients completed the SF-36 at yearly intervals. Only patients who had >5 completed QOL questionnaires were included in these analyses. Generalized estimating equation models were run separately for each of the 8 subscales and for the physical and mental component summary scores, adjusting for repeated measures by patients. Results. A total of 495 patients were included. The mean ؎ SD disease duration at the first visit was 5.3 ؎ 4.1 months. The mean ؎ SD age at enrollment was 35.8 ؎ 13.2 years. All 8 subscales and the 2 summary scores showed improvement in the first 2 years from enrollment. Between years 2 and 5, none of the subscales or summary scores showed any change. Minimum clinically important improvement was achieved by 35-56% of the patients and was influenced by demographic and disease factors. Conclusion. Unlike late-stage lupus, where QOL is stable over time, in patients with early disease, all subscales improve in early followup up to 2 years. Therefore, the SF-36 may be a sensitive outcome measure in early disease in patients with SLE.

Patient-Reported Outcomes in Systemic Lupus Erythematosus

“…The SF-36 has been utilized in both SLE clinical research studies (for example, [33-35]) and in clinical trials [36-38]. Further, the SF-36 is frequently employed as a legacy HRQOL instrument to validate other tools, including SLE-specific PRO-instruments [39-42].…”

“…Also, there have been concerns about the sensitivity of the SF-36 to capture the frequent changes in health status seen in SLE patients, especially over long periods of time. For example, little change in HRQOL was found in SLE patients who completed the SF-36 instrument over an eight-year period in one study [44], while in another study change in SF-36 was seen only during the first two years following SLE diagnosis then remained stable for the subsequent three years of follow-up [35]. In contrast, certain components of the SF-36 have been sensitive to change over shorter periods of time in clinical drug trials [36-38].…”

The Avise Lupus Test and Cell-bound Complement Activation Products Aid the Diagnosis of Systemic Lupus Erythematosus

“…SLE is a frequent diagnosis (20-60%) in patients who evolve over time from undifferentiated CTD to a specific CTD [6], however it may take several years for a definitive diagnosis to be made [15, 16]. On the other hand, early diagnosis and targeted and timely therapy may prevent flares and late organ damage [17], improve quality of life [18], and decrease healthcare utilization and costs [19-21]. …”

Association of age with health-related quality of life in a cohort of patients with systemic lupus erythematosus: the Georgians Organized Against Lupus study

“…Furthermore, many previous studies of HRQOL have targeted predominantly white populations,19 20 despite African-Americans having greater susceptibility to SLE and poorer outcomes of SLE, including greater disease activity and damage 21–25. Thus, examining these questions in a cohort with better representation of African-Americans is needed to advance our understanding of the effects of age, disease activity and damage on HRQOL in SLE.…”