Search

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: 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: 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.

Background: Treadmill training is used in rehabilitation and is described as improving gait parameters of patients with Parkinson's disease., Objectives: To assess the effectiveness of treadmill training in improving the gait function of patients with Parkinson's disease and the acceptability and safety of this type of therapy., Search Strategy: We searched the Cochrane Movement Disorders Group Specialised Register (see Review Group details for more information) (last searched March 2009), Cochrane Central Register of Controlled Trials (The Cochrane Library 2009, Issue 2), MEDLINE (1950 to March 2009), and EMBASE (1980 to March 2009).We also handsearched relevant conference proceedings, searched trials and research registers, and checked reference lists (last searched March 2009). We contacted trialists, experts and researchers in the field and manufacturers of commercial devices., Selection Criteria: We included randomised controlled trials comparing treadmill training with no treadmill training in patients with Parkinson's disease., Data Collection and Analysis: Two review authors independently selected trials for inclusion, assessed trial quality and extracted data. We contacted the trialists for additional information. We analysed the results as standardised mean differences (SMDs) and mean differences (MDs) for continuous variables and relative risk differences (RD) for dichotomous variables., Main Results: We included eight trials (203 participants) in this review. Treadmill training improved gait speed (SMD 0.50; 95% confidence interval (CI) 0.17 to 0.84; P = 0.003; I(2) = 0%) (fixed-effect model), stride length (SMD 0.42; 95% CI 0.00 to 0.84; P = 0.05; I(2) = 0%), walking distance (MD = 358 metres; 95% CI 289 to 426; P < 0.0001; I(2) = 30%), but cadence did not improve (MD 1.06; 95% CI -4.32 to 6.44; P = 0.70; I(2) = 0%) at the end of study. Treadmill training did not increase the risk of patients dropping out (RD -0.07; 95% CI -0.18 to 0.05; P = 0.26; I(2) = 51%) (random-effects model). Adverse events were not reported., Authors' Conclusions: Patients with Parkinson's disease who receive treadmill training are more likely to improve their impaired gait hypokinesia. However, the results must be interpreted with caution because there were variations between the trials in patient characteristics, the duration and amount of training, and types of treatment. Additionally, it is not known how long these improvements may last.

Background: Patients regard health care professionals as role models for leading a healthy lifestyle. Health care professionals' own behaviour and attitudes concerning healthy lifestyle have an influence in counselling patients. The aim of this study was to assess consumption of alcohol, cigarettes and illegal substances among physicians and medical students in two German states: Brandenburg and Saxony., Methods: Socio-demographic data and individual risk behaviour was collected by an anonymous self-administered questionnaire. Physicians were approached via mail and students were recruited during tutorials or lectures., Results: 41.6% of physicians and 60.9% of medical students responded to the questionnaire; more than 50% of the respondents in both groups were females. The majority of respondents consumed alcohol at least once per week; median daily alcohol consumption ranged from 3.88 g/d (female medical students) to 12.6 g/d (male physicians). A significantly higher percentage of men (p < 0.05) reported hazardous or harmful drinking compared to women. A quarter of all participating physicians and one third of all students indicated unhealthy alcohol-drinking behaviour. The majority of physicians (85.7%) and medical students (78.5%) were non-smokers. Both groups contained significantly more female non-smokers (p < 0.05). Use of illegal substances was considerably lower in physicians (5.1%) than medical students (33.0%). Male students indicated a significantly (p < 0.001) higher level of illegal drug-use compared to female students., Conclusion: More than one third of the medical students and health care professionals showed problematic alcohol-drinking behaviour. Although the proportion of non-smokers in the investigated sample was higher than in the general population, when compared to the general population, medical students between 18-24 reported higher consumption of illegal substances.These results indicate that methods for educating and promoting healthy lifestyle, particularly with respect to excessive alcohol consumption, tobacco use and abuse of illegal drugs should be considered.

Background: To perform a systematic review about the effect of using clinical pathways on length of stay (LOS), hospital costs and patient outcomes. To provide a framework for local healthcare organisations considering the effectiveness of clinical pathways as a patient management strategy., Methods: As participants, we considered hospitalized children and adults of every age and indication whose treatment involved the management strategy "clinical pathways". We include only randomised controlled trials (RCT) and controlled clinical trials (CCT), not restricted by language or country of publication. Single measures of continuous and dichotomous study outcomes were extracted from each study. Separate analyses were done in order to compare effects of clinical pathways on length of stay (LOS), hospital costs and patient outcomes. A random effects meta-analysis was performed with untransformed and log transformed outcomes., Results: In total 17 trials met inclusion criteria, representing 4,070 patients. The quality of the included studies was moderate and studies reporting economic data can be described by a very limited scope of evaluation. In general, the majority of studies reporting economic data (LOS and hospital costs) showed a positive impact. Out of 16 reporting effects on LOS, 12 found significant shortening. Furthermore, in a subgroup-analysis, clinical pathways for invasive procedures showed a stronger LOS reduction (weighted mean difference (WMD) -2.5 days versus -0.8 days)).There was no evidence of differences in readmission to hospitals or in-hospital complications. The overall Odds Ratio (OR) for re-admission was 1.1 (95% CI: 0.57 to 2.08) and for in-hospital complications, the overall OR was 0.7 (95% CI: 0.49 to 1.0). Six studies examined costs, and four showed significantly lower costs for the pathway group. However, heterogeneity between studies reporting on LOS and cost effects was substantial., Conclusion: As a result of the relatively small number of studies meeting inclusion criteria, this evidence base is not conclusive enough to provide a replicable framework for all pathway strategies. Considering the clinical areas for implementation, clinical pathways seem to be effective especially for invasive care. When implementing clinical pathways, the decision makers need to consider the benefits and costs under different circumstances (e.g. market forces).

Objective and Methods: A complete vaccination status against infectious diseases is important for protecting health care professionals as well as patients. A survey based on a written questionnaire was conducted to record the actual vaccination status against diphtheria, hepatitis A und B, mumps, measles, poliomyelitis, rubella and tetanus. 642 general practitioners (family physicians and surgeons), 298 medical students and 962 nursing students from areas of eastern Germany completed the questionnaire., Results and Conclusions: There was no complete vaccination status against those diseases covered by the survey. Physicians had a good immunisation rate against tetanus (96.2%) and diphtheria (91.8%). The number of physicians without immunisation against measles (42.9%), HA (29.3%) and HB (12.7%) was unsatisfactory. Less than 50% of nursing students and medical students could show a complete vaccination status against MMR. In both student groups there were also gaps for vaccines against tetanus, diphtheria, HA and HB. Complete vaccination status was found to be in the range of 74-81% for tetanus, 51-66% for diphtheria, 47-63% for HA and 62-73% for HB. Furthermore, there is a need for actions to raise the immunisation rates and for improving the health protection for all persons involved (professionals and patients) in the health care system.

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.

Patients suffering from neuromuscular diseases and thoracic deformities may develop global respiratory failure during their illness. We wanted to judge clinical parameters and information from the patients' medical history to reliably, quickly and noninvasively diagnose a ventilatory failure. Therefore we evaluated 105 situations with and without mechanical ventilation from 29 patients with indication for noninvasive nocturnal mask ventilation. 6 clinical parameters (e.g. heart rate, oxygen saturation, relative vital capacity), 2 test results (pH and partial pressure of carbon dioxide (pCO2)) and 6 parameters from the patients' medical history (e.g. nycturia, frontal headache in the morning, breathlessness) were investigated. After statistical evaluation we could show a relation between heart rate and pCO2 (Spearman's correlation: r = 0.331, p = 0.001, n = 105; one-tailed significance: r = 0.335, p = 0.038, n = 29). Significant differences between the groups of nycturia incidence indicate a tight relation between the incidence of nycturia and the height of hypercapnia levels (ANOVA--analysis of variance: p = 0.001). Using logistic regression we could show that information regarding medical history, especially nycturia, frontal headache and indrawings, gives important indications for global respiratory failure (sensitivity 97.62-100%, specificity 57.14-76.19%). Pathogenesis needs to be elaborated further.