Health-Related Quality of Life and Employment Among Persons with Systemic Lupus Erythematosus
Section snippets
Health-related quality of life
Throughout the course of their disease, individuals with SLE face considerable physical, psychological, and social challenges. As long-term survival in SLE has become commonplace, measures that move beyond mortality or medical morbidity to capture the patient's perspective have become a critical aspect of appraising outcomes. Instruments that measure HRQOL attempt to characterize this subjective experience of illness. Rheumatologists have pioneered the measurement of HRQOL, dispelling notions
Biologic and physiologic variables and symptom status
The relationship between biologic and physiologic variables and symptoms (the patient's subjective physical, emotional, or cognitive state) is perhaps the most familiar concept to physicians and others involved in the clinical care of SLE. However, even this relationship proves surprisingly complex. Providers who care for patients with SLE intuitively realize this; in some patients, perceived symptoms correlate well with physician and laboratory assessments of disease activity. However,
Summary
SLE has a profound effect on HRQOL across a variety of domains, including symptoms, functional status, and general health perceptions, and results in significant reductions in employment. Current evidence supports the validity of examining HRQOL in SLE as a multidimensional construct influenced by a variety of individual characteristics, social circumstances, and environmental factors. As further studies elucidate the factors that affect HRQOL, measurement tools that capture meaningful change
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Innovative Trials and New Opportunities in SLE
2021, Rheumatic Disease Clinics of North AmericaCitation Excerpt :This is in stark contrast to several other autoimmune-driven diseases, including psoriasis, inflammatory bowel disease, and rheumatoid arthritis. In addition, the significant burden of disease is reinforced by low health-related quality of life measures among many patients with SLE.2 The paucity of successful SLE clinical trials, stemming from issues related to both study design and significant disease heterogeneity, is a painful reminder that we still have a long way to go.
The Categorization of Pain in Systemic Lupus Erythematosus
2021, Rheumatic Disease Clinics of North AmericaCitation Excerpt :It is also a very painful disease in which pain can dominate the lived experience of the patient.5 Furthermore, pain in SLE can occur in the context of other symptoms such as fatigue, which can impair quality of life beyond the consequences of inflammatory injury of the tissues.6–9 For the patient, pain is often the symptom that brings them to the physician, with pain relief the proximate goal of therapy.
Clinical characteristics and health related quality of life (HRQoL) in Egyptian patients with systemic lupus erythematosus
2019, Egyptian RheumatologistCitation Excerpt :Throughout the course of the disease, individuals' with SLE face considerable physical, psychological, and social challenges. The disease has profound effects on health-related quality of life (HRQoL) which have been extensively documented [12]. It is not possible to assess many of the symptoms and treatment effects associated with SLE using objective clinical measures alone.
Socioeconomic and disability aspects
2018, Dubois' Lupus Erythematosus and Related SyndromesMedicine Based Evidence for Individualized Decision Making: Case Study of Systemic Lupus Erythematosus
2017, American Journal of MedicineCitation Excerpt :In the Appendix (available online), we further clarify the distinction between information routinely reported in RCTs as part of evidence based medicine and information tuned to clinical practice (Medicine Based Evidence) that is often available, but not used, in RCTs. Systemic lupus erythematosus is a chronic autoimmune disease characterized by unpredictable flares, irreversible organ damage, adverse impacts on health-related quality of life, and increased mortality.1-4 The waxing and waning clinical course of systemic lupus erythematosus along with the breadth of organ systems involved make it challenging to reliably measure clinical outcomes and demonstrate the effectiveness and safety of new and established treatments.
A Retrospective Administrative Claims Database Evaluation of the Utilization of Belimumab in US Managed Care Settings
2015, Clinical TherapeuticsCitation Excerpt :Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can result in organ damage, negatively affects health-related quality of life, and is associated with increased mortality.1–4
Grant Support: Multidisciplinary Clinical Research Center P60 AR053308, Arthritis Foundation, American College of Rheumatology Research and Education Foundation, and 5R01AR56476-7.