Abstract
The aim is to describe a profile of systemic lupus erythematosus (SLE) patient (socio-demographic data, course of disease, health status, and health care utilization, SLE impact on their life, SLE awareness) and to explore the association of patient’s perspective with clinical indicators. Adult patients diagnosed by SLE were recruited in outpatient clinics (n = 76, 88% female, data collected in 2012–2016, Slovakia). The association of patients’ perspective (SLE status, health complaints during remission, SLE impact, hospitalizations) with clinical activity (European Consensus Lupus Activity Measurement Index—ECLAM) and inflammatory marker (erythrocyte sedimentation rate—ESR) was assessed by t-test for independent variables and one-way ANOVA. Almost 17.9% of patients reported relapse. During remission, they mostly suffered fatigue and pain. Nearly all patients were on chronic pharmacological treatment. Most of the patients assessed SLE impact on their life as restrictive (56.9%) or very restrictive (23.1%). The most frequent source of information was their physician, and 67.2% reported that they have sufficient information about the disease and its treatment. Only the association of SLE status and hospitalization with clinical activity (ECLAM) and inflammatory marker (ESR) were confirmed. With recent improvements in diagnostics and therapy options, the prognosis for patients with SLE has improved. Nevertheless, the impact of this disease on all areas of a patient’s life is extensive.
Highlights
Systemic lupus erythematosus (SLE) is defined as a chronic autoimmune disorder that is characterized by a typical multiorgan involvement pattern that is of great significance when it involves vital organs such as the kidney, cardiovascular system, and the central nervous system
Our aim is to describe a profile of systemic lupus erythematosus (SLE) patient, e.g., socio-demographic data, course of disease, health status, and health care utilization, SLE impact on their life, SLE awareness, and to explore the association of patients’ perspective (SLE status, health complains during remission, SLE impact, hospitalizations) with clinical activity (ECLAM), inflammatory marker (ESR) and positivity of antinuclear antibodies (ANA)
Systemic lupus erythematosus represents a systemic multi-organ inflammatory disease that especially affects younger people and its consequences significantly affect the everyday lives of patients
Summary
Systemic lupus erythematosus (SLE) is defined as a chronic autoimmune disorder that is characterized by a typical multiorgan involvement pattern that is of great significance when it involves vital organs such as the kidney, cardiovascular system, and the central nervous system. SLE is a disease with a development that is difficult to predict. The disease affects young people, especially young women. The estimated prevalence of SLE in Europe is 0.09%, affecting mostly women of working age (mean age at diagnosis, 33 years) [1]. SLE has a profound impact on the quality of life through reduced physical functioning, effects on mental and cognitive health, and work productivity [2]. Fatigue is an important factor influencing patients’ daily life independent of disease activity [3]. SLE affected women of childbearing age are about nine times more frequent than men [4].
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