Organization of care for multiple sclerosis in France

Multiple sclerosis (MS) is a disease with a number of aspects involving cooperation among many caregivers. In France, the organization of care for patients with MS has changed over the past 10 years with the development of specific structures, such as regional networks and expert centers. Their aims are to help improve MS patient care and quality of life. Multiple domains are involved, ranging from MS diagnosis to treatment, and including rehabilitation and the psychological and social impact of the disease. Thus, a personalized plan of care service is set up for each MS patient under the guidance of MS healthcare professionals.     

The epidemiology of multiple sclerosis in Europe

Multiple sclerosis (MS) is a chronic and potentially highly disabling disorder with considerable social impact and economic consequences. It is the major cause of non-traumatic disability in young adults. The social costs associated with MS are high because of its long duration, the early loss of productivity, the need for assistance in activities of daily living and the use of immunomodulatory treatments and multidisciplinary health care. Available MS epidemiological estimates are aimed at providing a measure of the disease burden in Europe. The total estimated prevalence rate of MS for the past three decades is 83 per 100 000 with higher rates in northern countries and a female:male ratio around 2.0. Prevalence rates are higher for women for all countries considered. The highest prevalence rates have been estimated for the age group 35–64 years for both sexes and for all countries. The estimated European mean annual MS incidence rate is 4.3 cases per 100 000. The mean distribution by disease course and by disability is also reported. Despite the wealth of epidemiological data on MS, comparing epidemiological indices among European countries is a hard task and often leads only to approximate estimates. This represents a major methodological concern when evaluating the MS burden in Europe and when implementing specific cost-of-illness studies.     

The genetic epidemiology of multiple sclerosis

Multiple sclerosis (MS) is a debilitating immunological and neurodegenerative disorder. Epidemiological studies have provided overwhelming evidence of complex genetic susceptibility to MS. However, with the exception of the human leukocyte antigen (HLA) locus, genetic studies have failed to consistently identify significant linkage or association with genes that modulate MS disease expression. Numerous functional candidate gene studies, linkage genomic screens, and locational candidate gene studies have been performed in an attempt to identify additional loci. However, these methods have demonstrated insufficient power to consistently identify genes or epigenetic factors for MS. More current approaches integrate information from a variety of sources (e.g. consistent linkage data, gene expression profiling, and functional characterization studies) and utilize high throughput methods (e.g. genotyping high density markers, utilizing pooling schemes and performing new statistical analyses) in an attempt to overcome power issues. The following article presents a review of MS genetics research and a brief overview of methods that are currently being developed and utilized for fine localization of MS loci, such as the method employed in the Genetic Analysis of Multiple sclerosis in EuropeanS (GAMES) study that is presented elsewhere in this journal. It is the hope of researchers that these methods will lead to the identification of susceptibility genes for MS that aid in elucidating pathogenic mechanisms and potential therapeutic strategies for this debilitating disease.     

Corticomotor organisation and motor function in multiple sclerosis

Our objective was to determine whether there are changes in the corticomotor map for the hand in multiple sclerosis, and whether these changes correlate with indices of motor function and measures of corticomotor conduction or excitability. Transcranial magnetic stimulation (TMS) maps, motor evoked potential (MEP) latency and amplitude, motor threshold and EDSS and Purdue-pegboard measurements were made in 26 subjects with relapsing-remitting multiple sclerosis. Correlations were sought between these measurements using the Pearson product-moment correlation with a level of significance of p = 0.05 (two-tailed). Map displacement was positively correlated with MEP latency (p = 3 x 10(-4)) and EDSS (p = 0.007), and negatively correlated with Purdue score (p = 4 x 10(-4)). Purdue scores correlated with all MEP parameters (latency, p = 4 x 10(-10); threshold, p = 4 x 10(-6); amplitude, p = 0.003). We conclude that motor reorganisation is associated with impaired corticomotor conduction and may reflect a process of neural plasticity associated with axonal demyelination in MS. An understanding of motor function in MS should incorporate models of both axonal demyelination and conduction deficits as well as neural plasticity.     

The epidemiology of multiple sclerosis in Queensland, Australia

An epidemiological survey of multiple sclerosis (MS) in the State of Queensland was undertaken with its prevalence day being the national census day on June 30th, 1981, 20 years after a regional survey within the State. The relationship between increasing prevalence of MS and increasing south latitude within the State of Queensland which was suggested by the 1961 study was confirmed in the present study. The prevalence rate had increased significantly over the 20-year period between the studies but the State remained a medium frequency zone for MS (prevalence rate between 5 and 29 per 100 000 of population). Although a real increase in disease frequency could not be excluded as a contributing factor to the rise in prevalence, it was most likely due predominantly to an increase in life expectancy amongst the MS population and also in differential migration of a population at a greater risk of developing MS than the indigenous population. The proportions of Australian-born patients who had migrated to Queensland from the higher risk southern regions of Australia or travelled overseas to countries known to be high-risk for MS prior to disease onset, had fallen between the two surveys thus exerting, if anything, a negative influence on the change in prevalence. Analysis of MS prevalence rates amongst migrant populations in Queensland as compared to the more southerly city of Perth in Western Australia, suggested that the risk of acquisition of MS may extend over a wider age range than is generally accepted. Finally, there was an absence of MS cases amongst the Aboriginal population in Queensland but it can only cautiously be concluded from this study that the disease is rare in these peoples.     

Major depressive disorder and health care costs in multiple sclerosis

OBJECTIVE: Multiple Sclerosis (MS) is associated with elevated levels of depressive symptoms and an elevated frequency of depressive disorders. Depressive disorders, in general, are associated with substantial direct and indirect economic costs, and have been shown to increase the costs associated with the management of medical conditions in a variety of clinical settings. However, the impact of depressive disorders on costs associated with MS have not been evaluated. The objective of this study was to evaluate this association. METHODS: The Composite International Diagnostic Interview (CIDI) was used to identify subjects with major depressive disorder in a sample who had earlier been selected for a broader economic evaluation of the costs associated with MS. Costs were measured in two ways: retrospectively (by questionnaire covering a 2-year period) and prospectively (using a 6-month diary). The proportion of subjects reporting any costs and the proportion exceeding various cost thresholds were calculated in subjects with and without lifetime major depression. These proportions were compared using exact statistical tests and confidence intervals. Non-parametric (rank sum) tests were used to compare median costs. RESULTS: Of 136 subjects, 31 had a lifetime history of major depression. MS-related expenses evaluated retrospectively (e.g., house and vehicle alterations and purchases) did not differ depending on major depression status. In the prospective analysis, subjects with lifetime major depression were more likely to purchase vitamins, herbs, and naturopathic remedies (p < 0.01) and more likely to incur costs associated with utilization of services provided by alternative practitioners (p = 0.04). Other differences (e.g., in mental health care, medical specialists, general practitioner visits) were not observed. CONCLUSIONS: Contrary to expectation, this study did not find increased direct medical costs in persons with comorbid major depressive disorder and multiple sclerosis. Persons with comorbid MS and (lifetime) major depression did not incur greater costs or utilize more services. The Canadian health care system is guided by principles of universality and is publicly funded and administered, however, the lack of an impact of major depression on utilization may reflect limited access to services. The lack of an association between costs and major depression may or may not be generalizable to health care systems in other countries.     

Health status and health care utilization of multiple sclerosis in Canada

BACKGROUND: Persons with multiple sclerosis (MS) represent a small segment of the population, but given the progression of the disease, they experience substantial physical, psychosocial and economic burdens. OBJECTIVE: The primary aim was to compare demographic characteristics, health status, health behaviours, health care resource utilization and access to health care of the community dwelling populations with and without MS. METHODS: Cross-sectional survey using data from the Canadian Community Health Survey (CCHS 1.1). Adjusted analyses were performed to assess differences between persons with MS and the general population, after controlling for age and sex. Normalized sampling weights and bootstrap variance estimates were used. RESULTS: Respondents with MS were 7.6 times (95% CI: 5.4, 10.7) more likely to have health-related quality of life scores that reflected severe impairment than respondents without MS. Respondents with MS were 12.2 times (95% CI: 8.6, 17.2) to rate their health as 'poor' or 'fair' than the general population. Urinary incontinence and chronic fatigue syndrome were 18.7 times (95% CI: 12.5, 28.2) and 21.9 times (95% CI: 11.9, 40.3), more likely to be reported by respondents with MS than those without. Differences between the two populations also existed in terms of health care resource utilization and access and health behaviours. CONCLUSION: Large discrepancies in health status and health care utilization existed between persons with MS who reside in the community and the general population according to all indicators used. Health care needs of persons with MS were also not met.     

Practical problems in the organisation of clinical trials in multiple sclerosis

The problems of organising clinical trials in MS include the general aspects relating to clinical trials in any discipline but extend also to specific problems arising in the assessment of a relapsing remitting condition. These factors relating to the clinical characteristics of the disease, the diagnosis, the selection of patients and the methods of clinical and laboratory assessment are described and discussed. Suggestions are made for the use of internationally accepted diagnostic criteria for MS and a review is made of the other recognised problems in this field.     

Connected health and multiple sclerosis

There is as yet no consensual definition of “connected health”. In general, the term refers to the growing use of technology and, in particular, mobile technology in medicine. Over the past 10 years, there have been an increasing number of published reports on the wide-ranging and heterogeneous fields involving the application of technology in medicine, ranging from telemedicine to tools to improve patients’ evaluation and monitoring by physicians, as well as a multitude of patient-centered applications. They also represent promising tools in the field of clinical research. This report is a review of the importance of using this technology in the management of multiple sclerosis patients.     

Contribution to the epidemiology of multiple sclerosis in Poland

An epidemiological survey of multiple sclerosis was carried out in western Poland. Uneven local distribution of MS was found within 198 communes making up the territory. The disease was less frequent in 1981 than in 1965. A marked increase of population in age classes under 20 during the last decade may account for the observed differences in the prevalence rate. In the town of Gniezno, a new MS cluster was discovered.This text was presented as communication at the Italo-Polish meeting held in Rome on 20–21 April 1985, arranged by the Società Italiana di Neurologia.