title: [Quality of life and care of members of the Saxonian branch of the German Society for Multiple Sclerosis. Results of a written questionnaire].
abstract: Although multiple sclerosis is the most common neurological inflammatory disease among young adults in Europe and Northern America, population-based studies on the quality of life and care of persons affected by multiple sclerosis have not yet been frequently published in Germany. The aim of this study was to assess the quality of life and care as seen by members of the Saxonian branch of the German Society for Multiple Sclerosis. Between October 2002 and January 2003 a representative survey of the members (n=757) of the Saxonian branch of the German Society for Multiple Sclerosis was conducted on the basis of a written questionnaire. Multiple linear and logistical regression analyses were used to find determinants of the self-assessed quality of life and medical care. As a result of these multivariate analyses, the strong impact of disease-specific factors on the physical, mental and social well-being of participants was confirmed. The study hereby revealed that with disease progression the quality of life of affected persons, particularly elderly and invalid patients, patients with bladder and stool problems, and patients with mental problems, was significantly reduced. For these patients symptomatic treatment, which can mitigate the serious consequences of the disease, is of high importance. The fact that these patient groups partly reported a stronger dissatisfaction with their medical care situation indicates that it may not be adequate. With regard to drug treatment with beta interferons and azathioprin, a strong difference was observed between the number of patients who had already taken a beta interferon in the past and the number of patients who were currently on beta interferon, which indicates a high rate of patients breaking off the treatment. The results of this study suggest that there is potential for improvement of the medical and therapeutic care of persons affected by Multiple Sclerosis in Saxony. Adequate care, which takes into consideration the individually diverging disease courses, symptoms and psychosocial consequences, is required in order to maintain or optimize the quality of life.
authors.affiliation: Lehrstuhl Gesundheitswissenschaften/Public Health, Institut für Medizinische Informatik und Biometrie, Medizinische Fakultät Carl Gustav Carus, Technische Universität Dresden. Karen.Voigt@web.de
authors.forename: K
authors.initials: K
authors.lastname: Voigt
authors.forename: I
authors.initials: I
authors.lastname: Worm
authors.forename: J
authors.initials: J
authors.lastname: Klewer
authors.forename: S
authors.initials: S
authors.lastname: Twork
authors.forename: J
authors.initials: J
authors.lastname: Kugler
mesh_terms: D001294:Attitude to Health; D003695:Delivery of Health Care / Q000706:statistics & numerical data*; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000175:diagnosis / Q000453:epidemiology* / Q000523:psychology / Q000628:therapy*; D011379:Prognosis; D011788:Quality of Life; D011795:Surveys and Questionnaires