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systemic lupus prognosis.
Living with systemic lupus erythematosus in a European patient survey Lupus Sci Med. DOI: Methods: In MayLupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician's diagnosis of SLE living in Europe. Results: Data from SLE survey respondents The most commonly affected organ-systems included the joints Another diagnosis was given before that of SLE in systemic lupus prognosis The median number of symptoms reported was 9 IQR: out of 21, with fatigue most common Appropriate access to care was highly variable across countries and care component.
Conclusion: This survey underlines the burden and strong heterogeneity in the care of SLE across Europe, from the patient's perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.
Keywords: epidemiology; health care; outcome assessment; quality of life; systemic lupus erythematosus. No commercial re-use. See rights and permissions. Published by BMJ.]
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