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In the last years there has been a growing interest in self assessment of Health-related quality of life (HRQOL). Studies show a reduced HRQOL in patients with Multiple Sclerosis (MS). A sample of n=3 157 members of the German Multiple Sclerosis Association (71.7% women, aged 48.2 years on average) was analyzed regarding the correlation between coping styles and HRQOL in MS patients. The findings show reduced HRQOL in MS patients in comparison to the general population in West Germany. MSQOL-54- and MSIS-29-sumscales and FKV-LIS-scales "depressive coping" and "minimizing importance" correlate significant: a depressive or trivializing coping style accompanies with reduced mental and physical HRQOL., (© Georg Thieme Verlag KG Stuttgart · New York.)

Lack of treatment adherence is a significant issue in multiple sclerosis (MS). The aim of this project was to examine whether establishing an observational situation in the context of a non-interventional study could positively affect the treatment adherence, quality of life as well as patient satisfaction in 206 MS patients treated with Copaxone(®). Apart from 3 standardised, anonymous surveys no further measures were taken. Self-efficacy increased in the patients, which was also reflected in a decline in physician visits in the monitoring period. The number of consultations initiated by the patient decreased very much between the second and third patient surveys. In the quality of life area "health", there was a significant improvement. After 3 months there was a discontinuation rate of 10.4%; after 6 months 8.8%. Even though this was not a controlled study, these results could indicate that, on a short-term basis, patients can be motivated to adhere--probably as a result of the psychological aspects of the observational situation. However, long-term changes in behaviour can probably only be achieved through qualified training., (© Georg Thieme Verlag KG Stuttgart · New York.)

Background: Progression in disability as measured by increase in the Expanded Disability Status Scale (EDSS) is commonly used as outcome variable in clinical trials concerning multiple sclerosis (MS). In this study, we addressed the question, whether there is a linear relationship between disability status and health related quality of life (HRQOL) in MS., Methods: 7305 MS patients were sent a questionnaire containing a German version of the "Multiple Sclerosis Quality of Life (MSQOL)-54" and an assessment of self-reported disability status analogous to the EDSS. 3157 patients participated in the study. Patients were allocated to three groups according to disability status., Results: Regarding the physical health composite and the mental health composite as well as most MSQOL-54 subscales, the differences between EDSS 4.5-6.5 and EDSS > or = 7 were clearly smaller than the differences between EDSS < or = 4 and EDSS 4.5-6.5., Conclusion: These results indicate a non-linear relationship between disability status and HRQOL in MS. The EDSS does not seem to be interval scaled as is commonly assumed. Consequently, absolute increase in EDSS does not seem to be a suitable outcome variable in MS studies.

Aim: Research on life circumstances, quality of life (QOL) and coping behavior in mothers with multiple sclerosis (MS)., Method: Anonymous standardised questionnaire sent to 7,050 members of a section of the German MS Association (response rate 44.8%). Comparison of 482 mothers with MS (children aged < 18 years) with 607 childless women with MS., Results: No statistically significant differences concerning age, MS course, complaints or number of exacerbations. Mothers with MS more frequently had a relationship, a higher monthly net income, were less employed, EDSS-score was lower and disease duration shorter. In QOL mothers with MS showed better social aspects even after multivariate adjustment for sociodemographic and disease-related variables. Influencing parameters on the social area of QOL were employment status, age, monthly household net income and disability. In their coping behavior mothers tended more to "religiosity/search for sense in life"., Conclusion: There were several differences in sociodemographic data, QOL and coping behavior factors between mothers and childless women with MS. However, if motherhood itself has an influence on QOL and coping can not be derived from our data but there are some hints that motherhood seems to be no potential problem for living with the disease. Further research upon this topic is needed.

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.

Objective: To assess the compliance, satisfaction and adverse effects of immunomodulating drugs in a German multiple sclerosis (MS) population., Research Design and Methods: A standardised, anonymous questionnaire was sent to the 1985 members with MS of the Berlin section of the German Multiple Sclerosis Association. Patients were questioned with regards to sociodemographic data, MS-related topics, therapy, adverse effects and compliance. The response rate was 51.1%, from which 681 patients were selected who were experienced in therapy with interferon beta 1a or 1b or glatiramer acetate., Results: Most participants were treated with beta-interferons and only one-third with glatiramer acetate. Patients were moderately satisfied with their medication. Approximately 75.5% of patients had used the medication for longer than 2 years, especially those with a relapsing-remitting course (RRMS). Around one-third of all participants had their immunomodulating drug changed, mostly only once. The main reasons for discontinuation of the therapy were adverse effects, physician's recommendation and lack of treatment effect. Mood-related adverse effects (e.g., depression), fever and pain were perceived as most disturbing. Regression analysis revealed that dependence on a wheelchair and a secondary progressive course predicted a low compliance to treatment., Conclusion: Treating MS is a challenge and to positively influence the course of the disease it is necessary to administer medication in a constant manner. Our data showed a moderate compliance and satisfaction with the immunomodulating medication. Adverse effects and perceived lack of treatment effect were reasons for discontinuation of therapy. To increase compliance and satisfaction with treatment, adequate information about MS, the therapeutic options, handling of medication, side-effects and their management are necessary. Additionally, realistic therapeutic aims should be discussed with the patients.

Background: Multiple sclerosis (MS) is a challenging disease for patients, the social environment, and therapists. We analysed how coping training and compliance of MS patients are assessed by neurologists in private practice., Method: One thousand five hundred and seventy-five neurologists in private practice were asked to fill in short, standardised, anonymous questionnaires concerning number of MS patients treated per year, experience with coping training methods, assessments of requirements, aims, location, and suitable trainer, financial aspects of coping training, assessment of patient compliance concerning immunomodulating therapies, and possibilities of increasing compliance., Results: The response rate was 25.7% (404 questionnaires). Of these, 344 (21.8%) could be included in the analysis. Many neurologists had no experience with coping training methods but saw a reasonable demand, especially for newly diagnosed MS patients, those with psychological problems, and for their relatives. Most of them would like to provide such training themselves in their own locations. Useful aims of coping training included reduction of anxiety, uncertainty, and depression and increased patient compliance and well-being. They proposed that coping training should mainly be financed by health care insurers and patients. Neurologists assessed the compliance of MS patients concerning immunomodulating therapies as being moderate to high. Increased compliance was understood as better doctor-patient conversations, involvement of MS nurses, and support from self-help groups., Conclusion: There is a reasonable need of coping training for MS patients that is also seen by privately practicing neurologists, the main therapists for MS patients. The selection of adequate and scientifically reliable training should be improved. Thus coping with the disease, compliance, and well-being can all be improved.