Living with Systematic Lupus Erythematosus: A Profile of Young Female Patients.

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.

Systemic lupus erythematosus--disease impact on patients.

AIM: Systemic lupus erythematosus (SLE) is an inflammatory autoimmune disease that can affect almost all organs of the body. Lupus is a non-curable disease and the treatment is based on symptom control by immunosuppressive and anti-inflammatory treatment. The disease itself as well as treatment-related adverse events have a significant negative impact on life expectancy and quality of life of patients. The aim of this study was to identify the impact of the disease on life of SLE patients. METHODS: Data were collected anonymously using a special questionnaire. The survey involved 76 patients with SLE, results were processed by conventional methods and descriptive statistic methods. RESULTS: The survey has confirmed the impact of SLE on professional activities i.e. up to 63% of patients are registered disabled, of which 46% are granted full disability pension. SLE negatively affects patients' career--up to 39% of SLE patients stated that they had to change a job due to their disease. SLE has a strong impact on everyday life of patients. SLE symptoms are significant even during the period of quiescence--predominantly fatigue, reduced physical activity, pain. The most influenced activities of daily living included sunbathing and more strenuous activities or sport. The fact that limitations in all monitored activities are present in more than 50% of patients is a serious finding. Treatment-related adverse events have negative impact on the quality of life in almost 70% of patients. The most frequent events include gastrointestinal symptoms, visual disturbance and osteoporosis. CONCLUSION: SLE has a significant impact on the quality of life of patients and hinders them from leading everyday life at the level comparable to healthy population.