Quality of life over time in patients with systemic lupus erythematosus

Abstract

Objective. To determine whether quality of life in patients with systemic lupus erythematosus (SLE) measured by the Short Form 36 (SF-36) changes over time and which patient-and disease-related factors influence such change. Methods. SLE patients who had >6 SF-36 evaluations during followup were identified from a database. Outcomes were slopes of scores of the 8 SF-36 domains as well as the physical and mental component scores. Based on the direction of the slope, patients were designated as unchanged, improved, or worsened. Linear regression models were used to test the contribution of risk factors to slopes. Nonparametric tests were used to evaluate risk factors between patterns of clinical change. Results. A total of 146 patients had >6 SF-36 evaluations in 1,047 visits over a mean ؎ SD period of 8.2 ؎ 1.1 years. During the interval, the majority of patients showed no change in the SF-36 domains and only a small minority demonstrated improvement. Physical and mental component scores were unchanged in 84.3% and 87.7% of patients whereas 4.1% and 7.5% improved, respectively. According to slopes of the domains and summary scores, only physical functioning demonstrated a significant decrease over time. There were no lupus disease features associated with decline in physical functioning except for the presence of fibromyalgia. Conclusion. The SF-36 in SLE patients with established disease changed little over an 8-year period. Changes in the SF-36 were not affected by disease activity, steroids, or damage accumulation during the interval, but were affected by the presence of fibromyalgia.

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

“…Whether SF-36 is responsive to change is still in question. It has been shown previously that in SLE patients with established disease, the SF-36 changes little over an 8-year period (17). Changes in the SF-36 are not affected by cumulative disease activity, steroid use, or damage accumulation during the interval, but are affected by the presence of fibromyalgia.…”

“…Once the disease was stabilized at years 2-5, the SF-36 remained unchanged. Although we did not test this within this study, this hypothesis is supported by the studies that showed improvement in the SF-36 in clinical trials (18,19,21), but no change in studies with prevalent patients late in the course of disease (17). We also did not include fibromyalgia in the current models, since this item is not collected in the SLICC database.…”

Calidad de vida relacionada con la salud, factores psicológicos y fisiopatológicos en pacientes con diagnóstico de Lupus Eritematoso Sistémico - LES

“…Al respecto, los estudios no son concluyentes respecto al tiempo de diagnóstico de la enfermedad de LES, ya que hay investigaciones que demuestran que no hay cambios significativos en la CVRS en pacientes con LES evaluados durante ocho años (Kuriya, et al, 2008), mientras que otros autores plantean que los años de evolución de la enfermedad pueden afectar de manera importante la percepción de salud general de la CVRS (Freire, Maia, Nepomuceno y Ciconelli, 2007;Kulczycka, et al, 2008). Se ha visto incluso en otros tipos de enfermedades crónicas, véase hipertensión, diabetes, asma y migraña que la CVRS puede fluctuar a través del tiempo (Bazán, Osorio, Paredes y Ríos, 2003).…”

Comparison of the Sensitivity to Change of the 36‐Item Short Form Health Survey and the Lupus Quality of Life Measure Using Various Definitions of Minimum Clinically Important Differences in Patients With Active Systemic Lupus Erythematosus

“…Others have reported that some associations in certain situations, such as a significant clinical change in disease activity and short intervals between HRQoL assessments (1, 3, and 6 months), as in RCTs (9,12,(22)(23)(24). It has also been shown that the SF-36, when used to assess HRQoL crosssectionally, reflects the presence or absence of fibromyalgia as well as disease activity (5,25,26). Clearly, several factors might affect the association between disease activity (as a construct) and HRQoL scores, and this association is often explored by researchers in their studies.…”

“…Some are generic HRQoL measures, such as the Medical Outcomes Study Short Form 36 (SF-36) questionnaire, while others, such as the Lupus Quality of Life (LupusQoL) questionnaire, are disease-specific (2,3). The SF-36 is an internationally well-validated measure of HRQoL that has a broad scope of questions validated across different chronic diseases and comorbidities (1,(3)(4)(5)(6)(7). It was recommended by Outcome Measures in Rheumatology (OMERACT) IV for assessment in randomized controlled trials (RCTs) and longitudinal observational studies in SLE (8).…”