Quality of life and life circumstances in German myasthenia gravis patients
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RESEARCH
Open Access
Quality of life and life circumstances in German myasthenia gravis patients Sabine Twork1†, Susanne Wiesmeth1*†, Jörg Klewer1, Dieter Pöhlau2, Joachim Kugler1*
Abstract Background: Myasthenia gravis (MG) is a chronic neuromuscular disease. Advances in medical therapy have continuously increased the life expectancy of MG patients, without definitively curing the disease. To analyze life circumstances and quality of life (QoL), a large German MG cohort was investigated. Methods and Sample: In cooperation with the German Myasthenia Association, 2,150 patients with confirmed MG were asked to respond to a mailed questionnaire. The standardized questions related to demographic data, impairments, therapeutic course, use of complementary therapies, illness-related costs, and quality of life (SF-36). In total, 1,518 patients participated, yielding a response rate of 70.6%. The average age was 56.7 years, and the proportion of females 58.6%. Results: Despite receiving recommended therapy, many patients still suffered from MG-related impairments. In particular, mobility and mental well-being were reduced; moreover, quality of life was markedly reduced. Stepwise linear regression analysis revealed illness stability, impairments, mental conditions, comorbid diseases, and employment to be determinants of QoL. Conclusion: Results indicate that despite prolonged life expectancy among MG patients, health-related quality of life is low. This outcome resulted mainly from impaired mobility and depression. Physical and mental well-being might be improved by additional therapy options. Additionally, health care resources could be used more efficiently in these patients.
Background Myasthenia gravis (MG) is a chronic, autoimmune, neuromuscular disease. The annual incidence is reported as being 0.25-4 patients per 100,000 residents, with a prevalence of 8-15 patients per 100,000 residents. The first peak of onset is around the second and third decades of life, with another one around the fifth and sixth decades. Onset of MG up to the 40th year of life especially concerns women [1-6]. Myasthenic symptoms affect striated muscles. The hallmark of MG is painless, fluctuating or fatiguing weakness [7]. Patients complain early about diplopia. They often present with uni- or bilateral ptosis. Additional manifestations are bulbar symptoms such as speech and chewing disorders and dysphagia. Weakness * Correspondence: [email protected]; [email protected] † Contributed equally 1 Department of Health Sciences/Public Health, Faculty of Medicine “Carl Gustav Carus” at the University of Technology Dresden, Germany Full list of author information is available at the end of the article
of mimetic musculature (facies myopathica), proximal limbs, and trunk musculature can occur. In a few cases, severe muscle weakness results in respiratory failure. Typically, symptoms increase during the daytime and improve with rest [3-5]. In addition, it has been suggested that cognitive functions su
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