The cost of multiple sclerosis in Australia.

Multiple sclerosis (MS) represents a significant economic burden both to the patient and to society. This study aims to provide information about direct and indirect costs of MS in Australia. Detailed questionnaires were completed for 100 patients over a 6-month period (12 months for hospitalization costs). Overall, the average annual direct and indirect costs per patient were AU$20 396 and AU$15 085, respectively. The greatest uses of resources were for immunomodulating drugs, consultations and district nursing. Various factors significantly increased overall direct costs, including secondary progressive MS, severe MS symptoms and higher Expanded Disability Status Scale scores. This study confirms that MS is a costly disease with a high economic burden on society. In order to minimize MS costs and improve quality of life, the ideal aim of MS treatment should be to stabilize patients on a low disability (low cost) level at an early stage of the disease utilising a cost-effective therapy.     

Management of treatment-resistant depression

Given the limitations of evidence for treatment options that are consistently effective for TRD and the possibility that TRD is in fact a form of depression that has a low probability of resolving, how can clinicians help patients with TRD? Perhaps the most important conceptual shift that needs to take place before treatment can be helpful is to accept TRD as a chronic illness, an illness similar to many others, one that can be effectively managed but that is not, at our present level of knowledge, likely to be cured. An undue focus on remission or even a 50% diminution of symptoms sets unrealistic goals for both patients and therapists and may lead to overtreatment and demoralization. The focus should be less on eliminating depressive symptoms and more on making sense of and learning to function better in spite of them. It is important to acknowledge the difficult nature of the depressive illness, to remove blame from the patient and clinician for not achieving remission, to set realistic expectations, and to help promote better psychosocial functioning even in the face of persisting symptoms. The critical element when implementing such an approach is a judicious balance between maintaining hope for improvement without setting unrealistic expectations. It is important to reemphasize that following a disease management model with acceptance of the reality of a chronic illness is not nihilistic and does not mean the abandonment of hope for improvement. The first step in treating a patient with TRD is to perform a comprehensive assessment of the patient’s past and current treatment history to ensure that evidence-based treatment trials have in fact been undertaken, and if not, such treatment trials should be implemented. If the patient continues to have significant residual symptoms, it is important to determine the impact is of these symptoms on the patient’s quality of life and ability to function. It is also important to evaluate the factors that may be contributing to the persistence of depressive symptoms such as comorbid personality disorders, somatic disorders, substance abuse, and work and interpersonal conflicts. The treatment of patients with TRD needs to move beyond attempts to modify symptoms without taking into consideration and attempting to modify the patient’s personality, coping skills, and social system. Further somatic treatment trials can be undertaken, if desired by the patient and therapist, as a small (5%–15%) percentage of patients may respond and further treatment trials, and this may engender hope. The risk with this approach is that patients and therapists may not work at disease management skills if they believe there may be a resolution of the depression if they could just find the right medication or intervention. Therapists may also feel pressured by patients, families, insurance companies, as well as their own sense of helplessness to escalate treatment in a more and more aggressive manner in an attempt to achieve an elusive remission. A disease management program can provide the therapist and patient with sufficient structure, skills, and goals to encourage ongoing treatment without resorting to unproven measures that may create more side effects and problems. It is particularly important to include the patient’s significant others in the reformulation of the patient’s problem and thereby learn how to manage the illness more effectively. Significant others and family members can be invaluable in providing support for dealing with the difficult process of acquiring a new skill set. Indeed, they spend significantly more time with the patient than does any therapist. Family members are likely to provide this kind of support only if they have been part of the assessment and treatment process. Patients with a wide range of chronic medical illnesses can and do learn to function effectively and to achieve a satisfying quality of life in spite of their illness. There is no reason to think that patients with TRD should not be able to achieve a similar level of illness management, functioning, and quality of life.     

Aggressive course of cognitive impairment in multiple sclerosis: A new term for the management of patients

Multiple sclerosis (MS) can create different kinds of symptoms by involving different fields of the central nervous system. Cognitive impairment (CI) is one of the symptoms that can be caused by the onset of the disease and provide a change in the patient’s quality of life. Considering the course of the disease, CI usually worsens increasingly, and there is usually a severe CI in patients with end stage of MS. However, progressing CI can be so fast and severe in a few patients that it can disrupt the daily affairs of the individual. This paper plans to define the aggressive course of CIs in MS patients according to the reported cases. This definition explains that, the aggressive course of CI in MS patients happens in less than 5 years from the onset of the disease, and during this time, it causes dementia in the patient.     

Intrathecal baclofen in multiple sclerosis: too little, too late?

The majority of patients with multiple sclerosis (MS) have symptoms of spasticity that increasingly impair function as the disease progresses. With appropriate treatment, however, quality of life can be improved. Oral antispasticity medications are useful in managing mild spasticity but are frequently ineffective in controlling moderate to severe spasticity, because patients often cannot tolerate the adverse effects of increasing doses. Intrathecal baclofen (ITB) therapy can be an effective alternative to oral medications in patients who have a suboptimal response to oral medications or who cannot tolerate dose escalation or multidrug oral regimens. ITB therapy may be underutilized in the MS population because clinicians (a) are more focused on disease-modifying therapies rather than symptom control, (b) underestimate the impact of spasticity on quality of life, and (c) have concerns about the cost and safety of ITB therapy. Delivery of ITB therapy requires expertly trained staff and proper facilities for pump management. This article summarizes the findings and recommendations of an expert panel on the use of ITB therapy in the MS population and the role of the physician and comprehensive care team in patient selection, screening, and management.     

The cause and management of bladder, sexual and bowel symptoms in multiple sclerosis

Neurological control of bladder, bowel and sexual function depends on intact innervation between cerebral controlling centres and the conus of the cord. It is probably the spinal cord disease in multiple sclerosis (MS) which is the main cause of the pelvic organ dysfunctions that occur. Essential to bladder management is understanding to what extent the patient has incomplete emptying while complaining predominantly of symptoms of bladder overactivity. Anticholinergic medication can be highly effective for treatment of detrusor hyperreflexia but if incomplete emptying is also part of the problem intermittent catheterization or some other means of improving emptying will be necessary. Although there is an increasing range of treatments available for erectile failure there is still little that can be done to help women with sexual dysfunction. However, patients of both sexes are likely to welcome the opportunity to discuss their problem. The prevalence of bowel dysfunction is higher in patients with MS than in the general population and there are a number of possible pathophysiological mechanisms for both the constipation and the faecal incontinence that occur. However, there are as yet few specific effective treatments.     

Neurorehabilitation in multiple sclerosis: an overview

Multiple sclerosis (MS) is a chronic progressive disease which is the leading cause, after road traffic accidents, of handicap in young subjects. The large range of symptoms associated with MS lead to continuing decline in mood and quality of life. Despite therapeutic advances, functional impairments have significant consequences. Neurorehabilitation can be highly contributive in this disease with the goals of increasing independence and quality-of-life and improving functional capacities. Individualized programs elaborated by a multidisciplinary team of experts are the key to success of rehabilitation. Assessment is difficult because of the underlying conflict between the philosophies of rehabilitation and evidence-based medicine. The aim of this paper is to provide an overview of MS rehabilitation. Physical exercise is safe and should be encouraged for people with MS. Some studies have shown that supervised exercises have a beneficial effect on MS disability and quality of life. Inpatient rehabilitation for MS yields short-term benefits in function, mobility and quality of life; periodic hospitalization may be needed. In the future, rehabilitation professionals will have to learn how to anticipate patient needs and lay the groundwork for services and equipment in advance. Rehabilitation is one of the treatments of MS patients and should be viewed as an ongoing process to maintain and restore maximum function and quality of life.     

Efficacy of a soft hand brace and a wrist splint for carpal tunnel syndrome: a randomized controlled study

Background – The first ever diagnosis of multiple sclerosis (MS) requires consideration of both diagnostic criteria and differential diagnosis. Clinicians are particularly challenged by rare conditions which may mimic MS symptoms and relapses. Case report – We report the case of a young female patient who presented with relapsing left hemispheric symptoms that were highly suspicious of MS but were caused by an idiopathic occlusive angiopathy of the circle of Willis. Conclusion – Occlusive disease of the great cerebral arteries in young patients is a rare but important differential diagnosis of MS. It has to be considered in patients presenting with the first symptoms suspicious of MS as substantial treatment consequences will arise.     

Intravenous polyclonal human immunoglobulins in multiple sclerosis

Intravenous immunoglobulin (IVIG) is an established therapy for demyelinating diseases of the peripheral nervous system. IVIG exerts a number of effects that may be beneficial in multiple sclerosis (MS). Four double-blind IVIG trials have been performed in relapsing-remitting MS. A meta-analysis of the four trials has shown that IVIG reduces the relapse rate and, possibly, disease progression. In patients with a first episode of demyelinating disease, IVIG delays the time to the second relapse and thereby to the diagnosis of definite MS. In patients with an acute MS relapse, IVIG as add-on therapy to methylprednisolone does not make remission of symptoms faster or more complete. IVIG does not seem to be of any benefit to chronic visual or motor symptoms in MS. In secondary progressive MS, IVIG has not shown any effect on disease progression, relapses or new magnetic resonance imaging lesions. Experimental studies in the MS model experimental autoimmune encephalomyelitis in rats demonstrate that IVIG has to be administered at the time of induction of a relapse in order to be effective. In conclusion, IVIG can be considered as a second-line treatment to approved therapies for relapsing-remitting MS, but the ideal dosage of IVIG still needs to be determined. In order to be a first-line treatment for MS, the beneficial effect should be confirmed in a large-scale placebo-controlled survey, or in a study comparing the effect with approved therapies for relapsing-remitting MS using appropriate clinical and magnetic resonance imaging outcome measures.     

Pharmacological treatment of pain in multiple sclerosis

Pain is a common symptom in multiple sclerosis (MS) and was recently estimated to be experienced by up to 75% of patients. Nociceptive and neuropathic pain in MS may be present concurrently and at different stages of the disease and may be associated with other symptoms. Evidence for treating pain in MS is limited. Many clinical features of pain are often unrecognized by clinicians and are difficult for patients to describe. Treatment is often based on anecdotal reports and clinical experience. We present a review of treatment options for pain in MS that should serve to update current knowledge, highlight shortcomings in clinical research and provide indications towards achieving evidence-based treatment of pain in MS.     

Is malnutrition a problem for multiple sclerosis patients?

Nutritional problems associated with multiple sclerosis (MS) have been observed in a number of studies and case reports. However, the prevalence of malnutrition in MS patients is currently unknown. The primary aim of this study was to assess the prevalence of malnutrition in MS patients and to compare the frequency of malnutrition in MS to that of other diseases. The second aim of the study was to determine whether malnutrition was associated with MS type, disease duration or disability status in MS patients. One hundred two MS patients were included in the current study. The control group consisted of 50 patients with other chronic neurological diseases. Neurological examination scores, Kurtzke Functional System Scale scores, serum albumin levels, sedimentation rate and C reactive protein (CRP) were recorded for all patients. Chronic malnutrition was defined as serum albumin levels below 3.5 g/dl with normal sedimentation rate and CRP levels. Twelve MS patients and one control patient were diagnosed with chronic malnutrition, but the difference was not statistically significant (p = 0.062). In the MS group, MS type, disease duration, number of attacks, Expanded Disability State Score and Functional System Scale scores were not significantly different regardless of patients’ serum albumin levels. We found malnutrition was more prevalent in MS patients than in other chronic diseases. Malnutrition in MS patients was independent of disease course, disease duration, number of attacks, disability status and functional system involvement. These results should be confirmed with further prospective studies in larger MS populations from several facilities.     

Management of multiple sclerosis across managed care and fee-for-service systems

OBJECTIVE: To measure and compare care for adults with MS across managed care and fee-for-service (FFS) health systems. METHODS: The authors sampled adults with MS having physician visits over a 2-year period from a group model health maintenance organization (HMO) in southern California, from a midwestern independent practice association (IPA) model managed care plan, and from the FFS portion of the practices of a random sample of southern California neurologists. The authors mailed surveys to subjects in mid-1996; 930 of 1,164 (80%) of those eligible responded. The authors measured sociodemographic and clinical characteristics, management of recent changes in mobility, bladder control, and fatigue, use of a disease-modifying agent, assessment of general health symptoms and issues, and unmet information needs. The authors adjusted comparisons between systems for comorbidity, disease severity, and disease type. RESULTS: The groups differed on most sociodemographic and clinical characteristics. There were few differences in symptom management; differences that did exist tended toward more referrals or treatment for the FFS group. Access to the disease-modifying agent available at the time of the survey did not differ across systems, although patients' perceptions of the rationale for not using the drug did vary. General health issues and symptoms were more often assessed in the FFS and IPA systems than in the HMO, but improvement was needed across all three systems of care. There were substantial unmet information needs in all groups and especially high ones in the FFS and HMO samples. CONCLUSIONS: Strategies to improve care for people with MS should be developed and evaluated, particularly in areas like symptom assessment and meeting patient information needs. Where variations in service delivery exist, longitudinal studies are also needed to evaluate the potential impact on outcomes and to evaluate reasons for variation.     

Shared decision making and self-management in multiple sclerosis--a consequence of evidence

Shared decision making is increasingly recognised as the ideal model of patient-physician communication especially in chronic diseases with partially effective treatments such as multiple sclerosis (MS). Since 2001, we studied prerequisites for patient participation in decision making as well as the effects of evidence-based patient information on decision making processes in MS. In pre-studies we found that 80% of MS patients demand autonomous roles in treatment decisions which contrasts to a poor knowledge of risks. On the other hand MS patients are not disturbed by evidence-based, balanced complex information. MS patients can understand this kind of information and are able to transfer new abilities to other situations. Major information interests were related to symptom alleviation, diagnostic procedures and prognosis. Currently, we study the effects of a 4 hour education programme on relapse management versus an information leaflet as controls in 150 RR MS patients in a randomised-controlled trial. In a second trial including 280 MS patients we study the effects of an evidence-based decision aid on immunotherapy on decisional role preference and performance in the patient physician encounter. Results at the end of 2006 will show to which extent patient education with a focus on evidence-based patient information influences participation in the decision making process. Assuming that patient education programmes will enhance self-management abilities and the sense of control over the disease with enhanced quality of life and well-being, further modules covering all aspects of MS are to be developed.     

Depression and immunity: inflammation and depressive symptoms in multiple sclerosis

There is strong evidence that depression involves alterations in multiple aspects of immunity that may contribute to the development or exacerbation of a number of medical disorders and also may play a role in the pathophysiology of depressive symptoms. Accordingly, aggressive management of depressive disorders in medically ill populations or individuals at risk for disease may improve disease outcome or prevent disease development. On the other hand, in light of data suggesting that immune processes may interact with the pathophysiologic pathways known to contribute to depression, novel approaches to the treatment of depression may target relevant aspects of the immune response. Taken together, the data provide compelling evidence that a psychoimmunologic frame of reference may have profound implications regarding the consequences and treatment of depression. In addition, this approach may be used to investigate the possibility that peripheral and central production of cytokines may account for neuropsychiatric symptoms in inflammatory diseases. This article summarizes evidence for a cytokine-mediated pathogenesis of depression and fatigue in MS. The effects of central inflammatory processes may account for some of the behavioral symptoms seen in patients who have MS that cannot be explained by psychosocial factors or CNS damage. This immune-mediated hypothesis is supported by indirect evidence from experimental and clinical studies of the effect of cytokines on behavior, which have found that both peripheral and central cytokines may cause depressive symptoms. Emerging clinical data from patients who have MS support an association of central inflammation (as measured by MRI) and inflammatory markers with depressive symptoms and fatigue. Based on the literature reviewed in this article, subtypes of MS fatigue and depression may exist that are caused by different pathogenetic mechanisms, including inflammation and CNS damage as well as psychosocial factors or predisposition. The existence of these subtypes could have important clinical implications. For example, an inflammatory depression may require different therapeutic approaches than a reactive depression in MS. Future research should aim to characterize these subtypes better with the goal of optimizing treatment.     

A clinician's approach to modulate disease activity in MS

All multiple sclerosis (MS) patients should have their treatment profile carefully evaluated as to disease control, optimal therapy, and adverse side effects at every clinical visit, with the goal of safely minimizing disease activity. There is a general consensus among clinicians that therapy should be initiated early in the course of the disease and should be continued indefinitely unless disease activity continues, intolerable side effects develop, patient transitions to a primary progressive course, or more effective and safer drugs become available. Patients for whom treatment is delayed should be seen at least every 6 months, and therapy should be initiated if new disease activity is found. Magnetic resonance imaging is the most practical laboratory test currently available for monitoring ongoing tissue injury and is useful when evaluating the efficacy of a given therapy. Four immunomodulators and 2 immunosuppressants are currently approved for the treatment of relapsing or secondary progressive forms of MS; in addition, various immunosuppressive or immunomodulating drugs have been used off-label, alone or in combination, in clinical practice. Many issues remain to be resolved in attempting to modulate disease activity in MS patients. Consequently, the art of medicine and clinical judgment become important aspects of MS patient care.     

The role of intravenous immunoglobulin in the treatment of multiple sclerosis

Intravenous immunoglobulin (IVIG) has several effects on the immune system that could have a beneficial influence on disease processes in multiple sclerosis (MS). Owing to its anti-inflammatory properties, IVIG may be beneficial in the treatment of acute relapses and in prevention of new relapses. By promoting remyelination, IVIG could have a beneficial effect on disability and disease progression. Four double-blind trials in relapsing-remitting MS have demonstrated that IVIG reduces the relapse rate and the number of gadolinium enhancing lesions, and in this respect seems comparable to established therapies in relapsing-remitting MS, i.e. interferon-beta and glatiramer acetate. The doses of IVIG that have been used for treatment in relapsing-remitting have varied 10-fold, and the ideal dosage of IVIG for treating MS still needs to be determined. Three studies have been performed to assess the effect of IVIG on chronic visual impairment or established motor symptoms in MS. None of these trials could confirm that established symptoms in MS can be reversed by IVIG. In secondary progressive MS, a large randomized placebo-controlled trial has recently shown that IVIG is without beneficial effects in this phase of the disease. In conclusion, IVIG is a valuable alternative for treatment of relapsing-remitting MS in patients who do not tolerate or are unwilling to take the approved injectable medications, but additional studies are needed to establish the role of IVIG in the management of multiple sclerosis.     

The symptomatic management of multiple sclerosis

The management of multiple sclerosis (MS) revolves around disease management, symptom management, and person management. Of these, symptom management takes up the bulk of the time of the practicing physician. Some symptoms are easily managed whereas others are more difficult. Decisions have often to be made on whether to treat or to wait and watch. This article discusses the varied symptoms of MS and the approaches to management, which involves rehabilitation, pharmacological treatments, and surgical procedures. The skilled physician managing MS should be familiar with the multiple approaches to improving the quality of life of those with MS. After the diagnosis has been established and the decisions regarding treatment approaches have been made, the talk in a typical office appointment for MS usually turns to symptom management. Thus, the majority of management decisions made by the clinician revolve around that important topic. It is symptom management that will determine quality of life for those with MS, It is the basis for improving function, and, up until twenty years ago, it was the only basis for treating MS. Now, however, we can approach treatment by disease management, symptom management, and person management. The MS specialist must be well versed in all three areas.     

Developing tools to evaluate quality of care management for patients living with multiple sclerosis: An original French initiative

IntroductionAssessing the quality of care management for patients with a chronic disease such as multiple sclerosis (MS) is a major challenge for healthcare systems around the world. It needs to be carried out using tools that are recognized by professionals and patients alike, and should concern practices, systems, and scientific data. No such tools are currently available in Europe. The purpose of the present study was to develop indicators to contribute to assess the quality of care management for patients with MS in France.MethodsAn expert panel comprising 25 professionals from well known teams across France selected the indicators on the basis of consensus. In accordance with the Rand/UCLA Appropriateness Method, each expert had to agree with the recommendations, and there had to be agreement among the experts.ResultsThe expert panel selected 48 indicators representing seven domains of care management for patients with MS: physical and rehabilitation medicine, disease progression, access to care, magnetic resonance imaging (MRI) management, relapse management, management of disease-modifying treatments, and management of the symptoms of disability progression. Some of these quality indicators (notably pertaining to MRI management) had not previously been identified in the literature.ConclusionThese indicators may allow professionals to comprehensively assess and compare their practices and cooperation, thereby contributing to improve the quality of care management for patients with MS in France.     

Herramientas para la evaluación integral de la función sexual en pacientes con esclerosis múltiple

IntroductionMultiple sclerosis (MS) is a demyelinating disease of the central nervous system (CNS) that affects young adults, causing a variety of symptoms (motor alterations, visual alterations, loss of sphincter control, gait alterations) that impair the patient's functional status. However, other symptoms, such as sexual dysfunction, can also have an effect on quality of life.DevelopmentSexual dysfunction can occur at any time during the course of the disease; its prevalence varies between 50% and 90%, and it can be secondary to demyelinating lesions in the spinal cord and/or brain or caused by symptoms that do not directly involve the nervous system (fatigue; psychological, social, and cultural factors; etc.). Although its prevalence and impact on quality of life are well known, sexual dysfunction is still frequently underestimated. Therefore, in this article we review the different scales for assessing presence or severity of sexual dysfunction, in order to offer early multidisciplinary management.ConclusionWe evaluated 5 questionnaires that could identify the presence of sexual dysfunction in patients with MS and determine its aetiology, assisting in treatment decision making. MS must be understood as a complex disease that encompasses and compromises different aspects of patients’ health, and goes beyond simply measuring disability.     

Polypharmacy in multiple sclerosis: Relationship with fatigue,perceived cognition,and objective cognitive performance

Objective

Patients with multiple sclerosis (MS) commonly use a variety of medications to slow disease progression, alleviate symptoms, and treat comorbid conditions. Polypharmacy has been linked to adverse outcomes in other patient groups, but has not been studied extensively in MS. We investigated the impact of polypharmacy on fatigue, objective neuropsychological performance, and subjective cognitive impairment in a sample of patients with MS.

Methods

MS patients (n = 85) completed a medication inventory, self-report questionnaires, and a battery of neurocognitive tests. MS patients with polypharmacy were compared to MS patients without polypharmacy, using multivariate analysis of covariance (MANCOVA).

Results

After controlling for disease characteristics, MS patients with polypharmacy (n = 28) exhibited prospective memory deficits and reported significantly more fatigue and subjective cognitive problems than MS patients without polypharmacy.

Conclusion

Clinicians and patients should carefully weigh the costs and benefits of prescribing multiple medications, as these may contribute to iatrogenic fatigue and cognitive problems in MS. Moreover, researchers should account for polypharmacy when conducting studies examining fatigue and cognition in MS.     

The epidemiology of multiple sclerosis: the Iceland model. Onset-adjusted prevalence rate and other methodological considerations.

The epidemiology of multiple sclerosis (MS) is characterized by the fact that there is an uneven distribution of the disease throughout the world. The two most commonly used indices of its frequency are the incidence and prevalence rates. The incidence rate reflects, to a great extent, the influence of environmental factors in triggering the clinical manifestations of the disease, if it is based upon the actual date of the initiation of symptoms, rather than the date of diagnosis. The prevalence rate is currently based on the date of diagnosis and includes all MS patients who are alive on a particular date, without regard to their ethnic origin, the site and the duration of residence or any other factors that may have influenced the acquisition of the disease. We propose that in order to make the concept of the prevalence rate possibly more meaningful, the term should refer, retrospectively, to all patients whose symptoms eventually led to the diagnosis of MS, even though the diagnosis was not yet established on an earlier prevalence day. In addition, only patients of the same ethnic background who have spent their prepuberal years in the geographical area under study should be included. We are calling this measure the onset-adjusted prevalence rate. Another problem encountered in epidemiological studies of MS relates to the common practice of adjusting prevalence data obtained for age and sex in one area to what is referred to as a "standard" American (or world) population, groups of great ethnic and age diversity. It is also curious that in many studies the bases for comparison of populations are census data obtained many years previously. We suggest that age and sex adjustment should be applied only to similar ethnic groups born and raised under different environmental conditions. We believe that data obtained by calculating an onset-adjusted prevalence rate restricted to a homogeneous group of patients sharing the same environment during the prepuberal years may provide valuable etiological clues.