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    You are here : Home » MS Research News » Quality Of Life

    Quality Of Life

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    More news can be found in New Pathways Magazine, our bi-monthly publication, and also check daily at MSRC: Latest MS News.

    Some MS patients experience “natural” improvements in disability

    MS MRIMultiple sclerosis (MS) patients sometimes experience “natural” improvements in disability at least over the short term, according to a new study led by researchers at the University of British Columbia and Vancouver Coastal Health Research Institute.

    The study, published this month in the Multiple Sclerosis Journal, is the first to quantify improvements in disability in patients who are not taking immunomodulatory drugs such as beta interferon drugs or glatiramer acetate.

    “Many people assume that MS patients experience only disease progression and an increasing disability,” says Helen Tremlett, the study’s lead author, an associate professor in the UBC Faculty of Medicine. “While we did observe that no change or a worsening in disability was most common, up to 30 per cent of patients did experience an improvement, and this was often sustained over one to two years.”

    While there were some patient characteristics more associated with a greater chance of improvement – including being female, younger, and having the relapse-remitting form of the disease – a wide spectrum of patients experienced episodes of improvement.

    “To date, no disease modifying drugs for MS that have gained licensed approval for specifically improving or reducing disability in MS,” adds Prof. Tremlett, who is also a member of the Brain Research Centre at UBC and VCH Research Institute. “However, we know that these drugs can be very helpful in reducing relapses, so our research provides additional important context for interpreting the findings of clinical trials.”

    Further research is needed to understand the biological mechanisms underlying these improvements in order to pinpoint possible drug targets, and to determine the potential capacity for drug intervention to enhance and prolong this natural, innate improvement for the benefit of patients.

    BACKGROUND | Natural improvements in MS

    Canada has one of the highest rates of MS in the world. MS can cause a loss of balance, impaired speech, extreme fatigue, and vision problems, among other symptoms. There are four types of disease progression in MS, which can be characterized as relapsing remitting, primary progressive, secondary progressive, or progressive relapsing.

    Research method:

    Anonymized clinical data of 2961 patients with MS residing in British Columbia who visited a B.C. MS clinic between 1980 and 2004 were accessed. Disability in MS patients is measured by the Expanded Disability Status Scale (EDSS) in eight functional systems, including sensory, visual, and cerebellar systems. Consecutive immunomodulatory drug-free EDSS scores one and two years apart were examined. EDSS scores were assessed and recorded after a face-to-face consultation with an MS specialist neurologist. EDSS scores were excluded once an immunomodulatory, immunosuppressant, or MS clinical trial drug was started, or if the score was recorded within one month post-relapse (‘attack’).

    In this study, published first online in June, improvements in disability were measured on the EDSS scale and classified in three ways: any improvement greater than or equal to 0.5 points; an improvement greater than or equal to 1 point; and an improvement greater than or equal to 2 points.

    Other members of the research team include Feng Zhu (UBC and VCH Research Institute), John Petkau (UBC), Joel Oger (UBC and VCH Research Institute), Yinshan Zhao (UBC), and the BC MS Clinic neurologists.

    Source: The University of British Columbia © Copyright The University of British Columbia 2012

    Hand function often overlooked in MS work-up

    Hand Function In MS Impairments in hand function are common in multiple sclerosis (MS) patients and are a significant quality of life issue, yet they are not routinely evaluated in clinical work-ups, a researcher said here.

    Half of patients with progressive MS took at least twice as long to complete the standard nine-hole peg test compared with healthy controls, and one-third had less than 50% of expected grip and pinch strength, reported Gloria von Geldern, MD, of Johns Hopkins University.

    But the usual symptom-assessment scales used to evaluate MS patients focus on lower-body issues such as gait and mobility, von Geldern said at the joint meeting of the Consortium of Multiple Sclerosis Centers and the Americas Committee for Treatment and Research in Multiple Sclerosis. Problems with hand strength and dexterity are not included.

    And, importantly, the study showed that impairment in hand function is not strongly correlated with lower-body disability as measured with hip strength or the 25-foot timed walk.

    Von Geldern and colleagues recruited 147 MS patients and 35 healthy volunteers for the study. Mean Expanded Disabilities Status Scale (EDSS) score was 3.6 (SD 2.2) for the patients, of whom 82 had relapsing MS and 59 had progressive disease.

    Four tests of hand function were administered: grip strength, pinch strength, finger tapping, and the nine-hole peg test. Results were adjusted for age and gender.

    Findings in patients with nonprogressive relapsing disease were generally similar to those in controls. Many patients with progressive disease, however, had clear impairments in all four measures of hand function:

    - Less than 50% of expected grip strength: 36% of progressive MS patients versus 0% of controls
    - Less than 50% of expected pinch strength: 33% versus 0% of controls
    - Finger tapping at least 50% slower than controls: 18%
    - Nine-hole peg test times at least twice as long as controls: 47%

    Performance on these individual measures did not necessarily correlate with each other. In particular, von Geldern said, grip strength was not strongly associated with 9-hole peg test results either in relapsing or progressing MS patients.

    However, pinch strength and finger-tapping times were significantly correlated with grip strength and with the nine-hole peg test in progressive MS patients. For those with nonprogressive relapsing disease, grip and pinch strength were significantly correlated, as was finger tapping with nine-hole peg test results (all P<0.01).

    The researchers also looked for associations between hand function and lower-body disability and did find two that were significant. Grip strength was significantly associated with hip flexor strength, and results in the nine-hole peg test with EDSS scores, the global measure of disability.

    Von Geldern told MedPage Today that these different associations for grip strength and the nine-hole peg test indicate that "they are assessing different things."

    Neither grip strength nor nine-hole peg test results were associated even weakly with 25-foot walk times, suggesting that hand function can be impaired when mobility is not, and vice versa.

    Overall, von Geldern said, variability in hand function among patients was not captured even indirectly with the EDSS or other common MS symptom assessments.

    The study also had a longitudinal component, with hand function tested over time.

    Von Geldern reported preliminary results for the nine-hole peg test in 133 patients and grip strength in 97 with approximately 3 to 5 years of follow-up for most patients (though some were followed for up to 11 years).

    About half the patients showed more than a 20% decline in grip strength, and roughly one-fifth worsened by more than 20% in nine-hole peg test performance.

    Von Geldern told MedPage Today that clinicians should incorporate hand function into their routine evaluations.

    "We should ask patients more about hand function and how it impairs their daily activities, especially in patients that have other disabilities," she said.

    Repeating the measurements over time would also be a good idea, she suggested, insofar as significant worsening could be a signal for changing treatment.

    Another lesson for clinicians is that patients may need physical or occupational therapy to address hand function, von Geldern said.

    The study was funded by the National Institutes of Health.

    Von Geldern declared she had no relevant financial interests. Other investigators reported relationships with Biogen Idec, Teva, Johnson & Johnson, Vertex, Abbott, Vaccinex, Genzyme, Novartis, Bayer, and EMD Serono.

    Primary source: Consortium of Multiple Sclerosis Centers-Americas Committee for Treatment and Research in Multiple Sclerosis
    Source reference:
    Von Geldern G, et al "How impaired is hand function in individuals with multiple sclerosis?" CMSC-ACTRIMS 2012; Abstract P28.

    Source: Medpage Today © 2012 Everyday Health, Inc. (07/06/12)

    Lifestyle changes give hope to MS patients

    Feeling GoodA Western Australian physician and his research team have reported positive results in managing Multiple Sclerosis (MS) through lifestyle modifications.

    The study, ‘Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis,’ published in the international journal Neurological Sciences, is based on healthy lifestyle changes that Professor George Jelinek has successfully followed himself since his diagnosis of MS thirteen years ago.

    The research was carried out over five years with a study cohort of over 300 people diagnosed with MS.

    Participants committed to a lifestyle modification program at an MS retreat at the Gawler Foundation in Victoria.

    After a baseline assessment participants were asked to complete a lengthy questionnaire one year after the MS retreat and again five years later.

    Results after one year showed a median improvement of 11.3 per cent in overall quality of life and after five years this percentage rose to 19.5 per cent.

    “Where else in all MS literature will you find an intervention showing nearly 20 per cent improvement in mental and physical health and overall quality of life, five years after diagnosis?” says Prof Jelinek.

    Medicinal doses of Vitamin D, sunlight, regular exercise, omega-3 fatty acids, low saturated fat diet, largely plant-based wholefoods and fish are recommended.

    Stress reducing activities such as meditation and yoga, and group and individual counselling sessions form part of the retreat program.

    Disease-modifying drugs administered early in the illness and steroids for any distressing acute relapses were also supported.

    However, the research anecdotally reports that many participants were not taking immune-modulating therapies.

    Professor Jelinek says it is wonderful to see many of the participants years later, looking happy and radiating optimism and often in considerably better health.

    “For some people there is no improvement, but for others the improvement is much more dramatic,” he says.

    “Many patients report the clearing of MS lesions from MRI scans.

    “Many experience life in a completely different way and their optimism and good health affect every aspect of their lives.”

    The Overcoming Multiple Sclerosis (OMS) research is now expanding to use a larger cohort.

    “We hope to answer important questions, essentially what can one do to change the course of MS and which particular lifestyle factors are the most important,” says Professor Jelinek.

    Professor Jelinek combines his work as an emergency surgeon in Western Australia, an MS researcher and group leader at the Gawler retreat.

    Source: Science Network Western Australia (07/08/12)

    Study finds exercise, sunlight treat Multiple Sclerosis

    Exercise and MS A decade-long study into treating multiple sclerosis has found lifestyle changes can slow its progression and in some cases remove the symptoms.

    Melbourne researchers found that a low saturated fat, plant-based diet, exercise, sunlight exposure and relaxation techniques can improve the health of sufferers.

    Study leader Professor George Jelinek says those lifestyle approaches, along with drug treatment, can improve quality of life for those with MS by 20 per cent.

    He says the finding is quite a breakthrough.

    "Some people didn't get better and some people didn't adhere to the lifestyle recommendations and some people have got worse, but conversely some people have got very dramatically better so that some people have had complete resolution of symptoms and are perfectly well," he said.

    "That's just a fantastic outcome for the people concerned."

    Professor Jelinek says the next step is to investigate exactly what factor or what combination of lifestyle changes made the difference.

    "We don't actually yet know what made the difference to these people," he said.

    "The next stage of our research is to get on and look at exactly what factors explained that improvement.

    "It's remarkable to us that we had such a significant improvement for people when the usual course should be progressive deterioration."

    Source: ABC News © 2012 ABC (15/03/12)

    Study examines MS patients who restrict activity due to fall concerns

    MS StudyWhile falls in people with multiple sclerosis (MS) are a main health concern, the percentage of those who restrict their activity because of concerns about falling (CAF) is unknown.

    A study in the March 2012 issue of Physical Therapy estimates the percentage of people who have MS and report falling, CAF, and activity restrictions related to CAF; examines associations of these factors with fall status; and explores associations of fall status with mobility functions and number of accumulated impairments.

    Patricia Noritake Matsuda, PT, PhD, DPT, from the division of physical therapy in the department of rehabilitation medicine at the University of Washington, Seattle, led the cross-sectional survey. A total of 575 community-dwelling people with MS provided information, including sociodemographics, falls, CAF, activity restrictions related to CAF, mobility function, and accumulated impairments. The researchers used chi-square statistics to explore associations among these factors.

    According to the results, of the participants, 62% reported CAF and about 67% reported activity restrictions related to CAF. For those who did not experience falls, 25.9% reported CAF and 27.7% reported activity restrictions related to CAF. Participants who reported moderate mobility restrictions had the highest percentage of falls, while participants who had severely limited self-mobility reported the lowest percentage. Furthermore, those who reported the highest percentage of two or more falls were those with 10 impairments.

    The researchers conclude that both CAF and activity restrictions related to CAF were common in people with MS. Those who experienced falls and those who did not reported these restrictions, and the association of fall status with mobility function did not appear to be linear. While the researchers found that fall risk increased with declining mobility function, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure.

    Source: Physical Therapy Products Copyright © 2012 Allied Media (05/03/12)

    Researcher's model will target causes of everyday MS symptoms

    NeuronsAnnoying, frustrating symptoms like difficulty hearing or remembering things can complicate everyday living for multiple sclerosis (MS) patients, but most research to date has focused on the disease's less frequent but more debilitating consequences.

    Recently, however, an increasing number of patients have expressed their desire for a better quality of life between relapses, as the body attacks its own central nervous system, which can cause blindness or the inability to use a limb.

    "Everyone reacts more strongly to changes that are big rather than subtle changes that occur every day," said Alexander Gow, Ph.D., professor in Wayne State University's Center for Molecular Medicine and Genetics and School of Medicine's departments of pediatrics and neurology, who recently received a one-year, $114,000 grant from the U.S. Department of Defense to develop a new model system that focuses on the latter.

    Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. Worldwide, it affects about 2.5 million people.

    Over time, Gow said, MS patients can lose their ability to focus mentally, forget what they want to do or have difficulty following conversations. But because the causes of MS are still somewhat unclear, he believes part of the reason for the lack of attention to such symptoms may lie in clinicians' inability to offer solutions to patients.

    Patients can become extremely depressed or frustrated at their inability to perform daily mental functions, which has led some to undergo drug treatments similar to those used to treat behavioural disorders. However, Gow said, such treatments may not be all that effective for many MS patients.

    He believes the immune system attacks that damage or destroy white matter brain cells (oligodendrocytes) and cause the more catastrophic symptoms of MS also destroy cells in the brain's gray matter cells (neurons), where auditory, visual and cognitive functions are based.

    "Changes in gray matter could well be associated with emotional outbursts," Gow said. "Cells involved in memory and learning are also being destroyed. Whenever those sorts of changes occur, you almost always see frustration in patients as they try to grapple with the resultant loss in mental capacity.

    "That causes them to be upset about not being able to do things, even if they don't know that's what's going on physically. This can also lead to them withdrawing from social settings with family and friends, which deepens the impact of MS."

    MS patients' more severe symptoms result when the immune system attacks the myelin that surrounds white matter cells, causing lesions that are visible in magnetic resonance imaging scans. Myelin is a soft, white coating of nerve fibers composed of fats and protein that serves as insulation and as an aid to efficient nerve fiber conduction. When myelin is damaged in MS, nerve fibre conduction is faulty or absent, resulting in impaired bodily functions or altered sensations.

    Gow said if viewed the right way, lesions also can be seen in gray matter, indicating that neurons and not just oligodendrocytes are being destroyed.

    "That then gives us an anatomical basis for memory loss and patients' inability to focus," Gow said.

    Because many brain pathways in Gow's model system are similar to those of humans, he is working to understand what happens when gray matter cells are destroyed as a consequence of the body's immune system. The grant will be used to look for more defined lesions in both white and gray matter when myelin is attacked.

    Researchers then will look for behavioural changes similar to those seen in MS patients. They will examine white matter for specific changes indicating the presence of biomarker substances that cause MS-like symptoms. If those substances are found, researchers then can try to administer drugs to reverse the effects of the myelin attacks.

    "Using different classes of existing drugs," Gow said, "novel therapies can be developed with shorter delays in moving from the bench to the bedside."

    Treating MS patients with drugs used for typical behavioural disorders such as schizophrenia and depression can have terrible side effects for patients, he said, and can be ineffective because the drugs are attempting to rectify nonexistent imbalances in brain neurochemicals. If successful, Gow's research will provide a way to more accurately diagnose what is happening to MS patients, which could result in more effective treatments and improved quality of everyday life.

    Source: Eureka Alert! Copyright ©2012 by AAAS, the science society (14/02/12)

    Many people with MS report difficulty walking or maintaining balance

    Walking and MSWalking difficulties or trouble with balance affect the majority of people with multiple sclerosis, and 70% of people with MS-related walking difficulties report that trouble walking is the most challenging aspect of MS. Yet, 40% of people with MS "rarely or never" discuss walking problems with their doctor, according to the results of a June 2011 survey conducted online by Harris Interactive on behalf of the National Multiple Sclerosis Society (NMSS) and Acorda Therapeutics ®, Inc.

    The results of the survey of more than 1200 adults living with MS were presented today at the 5th Joint Triennial Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS/ACTRIMS) in Amsterdam, the Netherlands.

    Approximately two thirds of people with MS (65%) report having trouble walking, the inability to walk or difficulty maintaining balance at least twice per week. In addition, a majority of people living with MS report that they experienced walking problems within the first few years after diagnosis. Among people diagnosed with MS within the past five years, 58% report experiencing a mobility issue at least twice a week.

    According to the survey findings, younger people with MS are less likely to initiate a conversation about trouble walking with a healthcare provider. On average, people with MS aged 41 or younger who do discuss trouble walking with their doctor initiate the conversation only 46% of the time.

    "These significant new findings show that many adults living with MS are hesitant to speak up about walking difficulties, and that younger patients are even less likely to proactively discuss these issues with a doctor," said Nicholas LaRocca, Ph.D., Vice President for Health Care Delivery and Policy Research at NMSS. "Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking ability or balance so that these issues can be addressed."

    The survey also found that both men and women with MS who report difficulty walking(1) believe that it can put them at risk, but that women are especially concerned that walking problems can be hazardous:

    An estimated 78% of these women and 62% of these men report that trouble walking "makes getting around dangerous."

    Additional findings related to falls revealed that:

    Among adults with MS who experience difficulty walking, 60% indicate that they have fallen and 34% of those individuals say that a fall resulted in an injury.

    Typically, people who have experienced falls report having fallen about three times in the prior six months.

    "To get help when walking difficulties arise, people with MS must take a more active role in discussing these issues with their doctors and other members of their care team. Options are available to treat walking impairment and they need to be pursued," added LaRocca.

    (1) Defined as experiencing trouble walking and/or inability to walk at least twice a week

    Walking Difficulties Also Shown to Affect Financial and Social Wellness

    Among all people with MS, six in ten (61%) report that it has interfered with their ability to work, resulting in a loss of personal income. Many people with MS who have trouble walking and are currently employed indicated that they had to make lifestyle changes, such as switching to a new career (21%) or stopping work altogether for a period of time (21%), because of their walking problems.

    Survey results also showed:

    79% of adults with MS who are employed report trouble walking has negatively impacted them in some way at work, including having to take days off, asking for special accommodations or reducing work hours, among others.

    60% of people with MS who have experienced difficulties walking have had to miss at least one major personal event as a result.

    32% of people with MS who have difficulty walking report that it has caused them to feel isolated.

    "These survey findings indicate that many people with MS experience physical, financial and emotional challenges caused by walking impairment. With these striking findings, we hope that more people living with MS, including younger patients with mild to moderate symptoms, will be motivated to discuss their mobility with their care team," said Andrew R. Blight, Ph.D., Chief Scientific Officer of Acorda Therapeutics.

    About the Study
    The online survey was conducted June 10-17, 2011 by Harris Interactive and was funded by the National MS Society and Acorda Therapeutics. The total sample included 1,246 adults over the age of 18 with MS in the United States. Results were weighted as needed for age, sex, race/ethnicity, education, region and household income. Propensity score weighting was also used to adjust for respondents' propensity to be online. No estimates of theoretical sampling error can be calculated; a full methodology is available upon request.

    Source: PR Newswire Copyright © 2011 PR Newswire Association LLC (20/10/11)

    The psychosocial and cognitive impact of longstanding 'benign' MS

    MS DiagnosisAbstract
    Background: Benign multiple sclerosis (BMS) is typically defined using the Expanded Disability Status Scale (EDSS), which relies heavily on ambulation. We set out to examine important psychosocial and cognitive outcomes in patients with longstanding BMS compared with patients who had recently progressed to 'no longer benign' (NLB).

    Methods: A previously reported cohort of BMS (EDSS ≤3 at 20 years disease duration) were re-assessed 25-30 years post-onset. Patients remaining benign (EDSS ≤3 at re-assessment) were compared with those NLB for: depression (Beck Depression Inventory), fatigue (Modified Fatigue Impact Scale), health-related quality of life (MSQoL-54), cognition (Rao's Neuropsychological Screening Battery), and employment status.

    Results: A total of 75% (66/88) of the original cohort were located. A total of 61 patients were re-assessed. Twenty-five patients (41%) had progressed in EDSS and were NLB. Compared with benign patients, those NLB were more likely to have: significant fatigue (15/36 [42%] vs. 18/25 [72%], p = 0.019); poorer physical functioning (mean MSQoL-54 = 67.30 vs. 50.89, p = 0.002); an MS-related negative change in employment status (13/36 [36%] vs. 21/25 [84%], p < 0.0001) and cognitive impairment (3/28 [11%] vs. 5/19 [26%]; trend only, p = 0.317). Depression and mental health quality if life differed little between the benign and NLB patients (p > 0.6).

    Conclusions: Despite remaining benign for 20 years, a significant proportion of patients progressed with further follow up. While neither depression nor patient-reported mental health quality of life was associated with EDSS progression, patients with longstanding 'benign' MS (EDSS ≤3 for 25+ years) had less fatigue, better physical quality of life and employment outcomes and infrequent cognitive impairment. Remaining benign over the long term, as defined by the EDSS, carried some advantages beyond ambulation.

    Sayao AL, Bueno AM, Devonshire V, Tremlett And The Ubc Ms Clinic Neurologists H.

    Neurology, Department of Medicine, Brain Research Centre, University of British Columbia, Vancouver, Canada.

    Source: Pubmed PMID: 21677023 (14/07/11)

    Cognitive function and quality of life in MS patients: a cross-sectional study

    Cognitive Function in MSAbstract (provisional)

    Nearly half of all patients diagnosed with multiple sclerosis (MS) will develop cognitive dysfunction. Studies highlighted from no/weak impact to a strong impact of cognitive impairment on quality of life (QoL). The aim of this study was to assess the impact of cognitive dysfunction on self-reported QoL in MS patients while considering key confounding factors.

    Design: cross-sectional study. Inclusion criteria: MS patients of any disease subtype. Data collection: sociodemographic (age, gender, marital status, education level, and occupational activity) and clinical data (MS subtype, disease duration); MS disability (Expanded Disability Status Scale, EDSS); depression (Beck Depression Inventory); fatigue (Modified Fatigue Impact Scale); QoL (SF36 and MusiQoL); and neuropsychological performance (Brief Repeatable Battery of Neuropsychological Tests, BRB-N). Statistical analysis: multiple linear regressions (forward-stepwise selection).

    One hundred and twenty-four patients were enrolled. Performance on BRB-N subtests varied widely (6% to 70% abnormal). The BRB-N classified 37-78% of the patients as cognitively impaired, depending on the definition of cognitive impairment. No links were found between the MusiQoL index and cognitive subtests, whereas marital status, EDSS, and depression were found to be independent predictive factors.

    The present study demonstrated the weak and scarce association between cognitive impairment and QoL, when the key confounding factors were considered. These results need to be confirmed with larger samples and more accurate tests of cognitive function.

    Karine Baumstarck-Barrau, Marie-Claude Simeoni, Francoise Reuter, Irina Klemina, Valerie Aghababian, Jean Pelletier and Pascal Auquier

    Source: BMC Neurology © 1999-2011 BioMed Central Ltd (03/02/11)

    Gap between patient and healthcare professional perceptions of MS mobility loss

    QuestionsNew survey research into mobility impairment in multiple sclerosis (MS) has revealed a gap between the perceptions of people with MS and their healthcare professionals. According to the survey, over half of healthcare professionals (56%) think their MS patients experience some loss of mobility, while published data reveal that up to 85% of people with MS suffer from impaired mobility. [1], [2]

    The survey, commissioned by Biogen Idec, investigated the experiences of
    MS patients and their care by neurologists and nurses. [1],[3] More than 400
    people with mobility issues due to their MS and 180 healthcare professionals from Canada, France, Germany, Spain, Sweden and the United Kingdom were surveyed.

    The findings are supported by two recent pieces of research which have
    shown that:

        - Walking ability, which is a significant component of overall
          mobility, is insufficiently monitored in MS patients by healthcare
        - 39% of people with MS and 49% of care partners never or rarely
          discuss mobility issues with a physician[5]

    "What is evident from this research is that mobility impairment in the MS
    population is under recognised as an issue by healthcare professionals. A
    better dialogue is therefore required between patients and their doctor or
    nurse, as well as more frequent and more accurate assessments to monitor
    patients' mobility," said Prof. Shibeshih Belachew, University of Liège,

    Mobility loss and the impact on quality of life

    In addition, the survey underscored the impact of mobility impairment on
    employment and the social lives of people with MS. Of patients surveyed:

        - Almost half (45%) report that their mobility problems had led
          them to lose friends
        - Almost three quarters (72%) said their mobility problems had a
          significant impact on their working lives
        - Nearly two thirds (64%) reported losing earnings due to
          MS-related mobility issues
        - More than a third (37%) admit to having suicidal thoughts due to
          their mobility challenges [3]

    "Loss of mobility can have a huge impact on all aspects of life for those
    living with MS. It has physical and psychological effects that can
    drastically reduce one's ability to work and contribute to society. We as
    physicians should provide guidance on how to appropriately manage mobility
    challenges and help people with MS to continue to lead productive lives and
    maintain their social, physical and mental well-being," concludes Prof.

    Mobility impairment can start early after diagnosis.

    The survey results also highlighted that mobility impairment can begin
    early in the disease. Nearly one in two (45%) of patients surveyed reported
    to have experienced mobility issues within the first month following
    diagnosis. [3]

    Early identification and management of mobility issues can help to
    improve the quality of life of people with MS. MS experts recommend this be
    done through exercise or physical therapy or by integrating strategies for
    disease and symptom management.[5] The neurologists and nurses surveyed by
    Biogen Idec found that patients required their support in finding a physical
    therapy plan.[1]

    [1] Mobility in MS Research: HEALTHCARE PROFESSIONAL Perspectives. Data
    on File. Biogen Idec. 2010.

    [2] Scheinberg L et al. Multiple sclerosis. Earning a living. NY Stat J
    Med 1980; 1395-1400

    [3] Mobility in MS Research: PATIENT Perspectives. Data on File. Biogen
    Idec. 2010.

    [4] Kesselring J. Disease progression in multiple sclerosis I. Impaired
    mobility and its impact on limitations of activities and social
    participation. Eur Neur Rev 2010; 5(1): 56-60

    [5] Halper J, Ross AP. Challenges in the treatment of mobility loss and
    walking impairment in multiple sclerosis. Int J MS Care 2010;12:13-16

    Source: (15/10/10)

    Life issues in multiple sclerosis

    MS FatigueAbstract
    A diagnosis of multiple sclerosis (MS), an uncurable condition, introduces great uncertainty into virtually all aspects of a person's life.

    From early in the disease course, people with MS are vulnerable to disempowerment, poor psychological health, and social exclusion including high unemployment.

    Current health-care research for people with MS is reviewed here within the context of three philosophies of disability and health-care service provision: the biomedical, biopsychosocial and sociopolitical models.

    Some of the uncertainties concerning the patient's life that result from MS have been reduced by improved diagnostic tools, advances in immunotherapy, multidisciplinary rehabilitation, community programs, and provision of information specifically designed to facilitate shared decision-making and empowerment.

    Such progress is modest, however, and substantial improvements to the psychological health, empowerment, and quality of life of people with MS requires more sociopolitically oriented research.

    Simmons RD.

    Australian MS Longitudinal Study, Level 2 East, Building 5, Canberra Hospital, PO Box 11, Woden, ACT 2606, Australia.

    Source: Nat Rev Neurol. 2010 Sep 21. & Pubmed PMID: 20856267

    Mobility loss leads to reduced productivity and earnings for those with MS

    MS Mobility LossNew research investigating how mobility impairment affects the lives of those with multiple sclerosis (MS) has found a substantial impact on workplace productivity and earnings.

    Almost three quarters (72%) of those surveyed said their mobility problems had a significant impact on their working lives and nearly two thirds (64%) reported losing earnings due to MS-related mobility issues.1

    The survey, commissioned by Biogen Idec, examined the issue of mobility impairment in more than 430 people living with MS from six countries. This research supports other previously conducted studies which have consistently found that mobility issues are a top concern for MS patients.2,3,4

    Of those who reported an impact on their working life, more than one third (39%) stated that mobility problems forced them to take time off of work – with some taking up to 40 days from work in the last six months. However, it was encouraging that 83% of respondents felt their employer was supportive.

    “The results of this survey reinforce our understanding that the loss of mobility is a leading concern for those diagnosed with multiple sclerosis,” said Professor Hans-Peter Hartung, Chairman of the Department of Neurology at Heinrich-Heine University, Düsseldorf, Germany.

    “We know that MS is a debilitating disease and these results implicate mobility loss as a primary driver in reduced productivity in the workplace. As physicians, we must continue to explore methods and treatments to better manage the physical and psychological impacts from mobility impairment.”

    The survey examined the life experiences of MS patients in Canada, France, Germany, Spain, Sweden, and the United Kingdom. Biogen Idec continues to analyze the results and will continue to share data with the broader MS community.


    •Research was conducted by an independent market research company.
    •Research was carried out between 4 June 2010 and 29 June 2010 utilizing a rigorous and robust questionnaire development process. The questionnaire was validated to ensure compliance with ICC/ESOMAR Code on Market and Social Research (European research guidelines) and the Market Research Society Code of Conduct. 
    •Respondents were recruited via a mix of patient group liaisons and online recruitment. International patient groups were utilized to recruit MS patients. A network of contacts in each country was also approached. The people invited to take part were pre-screened to ensure that they had been diagnosed with MS and fit the criteria for the research.
    •The survey was anonymous and completed online.
    •The survey sampled 436 people with MS from Canada, France, Germany, Spain, Sweden, and the United Kingdom. They were selected at random to help ensure a result representative of the overall MS patient population.

    1 Mobility in MS Research: Patient Perspectives. Data on File. Biogen Idec. 2010.

    2 Heesen C, et al. Multiple Sclerosis 988:14: 2008

    3 Scheinberg, L., Holland, N., LaRocca, N., Laitin, P., Bennett, A., & Hall, H. (1980). Multiple Sclerosis: Earning a living. New York State Journal of Medicine, 80, 1395-1400.

    4 Hemmet L, Holmes J, Barnes M, Russell IN. What drives quality of life in multiple sclerosis, Q J Med. 2004;97;671-676. Quality of life in multiple sclerosis.

    Source: Financial Post © 2010 National Post Inc. (28/07/10)

    Phone management works for Multiple Sclerosis fatigue

    MS FatigueA group-based, occupational therapist-run program delivered via teleconference is effective in treating the fatigue associated with multiple sclerosis (MS), with some benefits lasting up to six months, according to a study presented at CMSC-ACTRIMS.

    Treatment reduced patient-reported fatigue immediately after intervention and demonstrated an effect that was maintained at six weeks.

    "Fatigue is a common symptom in multiple sclerosis that challenges participation across a full range of activities of daily living," according to lead study author Marcia Finlayson, PhD, OTR/L, of the University of Illinois at Chicago, who presented the study here at the meeting of the Joint Consortium of Multiple Sclerosis Centers and America's Committee on Treatment and Research in Multiple Sclerosis.

    "Up to 90% of patients report it, and up to 50% report it as their worst symptom. People with fatigue experience other MS symptoms more strongly as a result of fatigue, and they give up a lot of pleasurable activities."

    Finlayson reported that prior studies have provided the rationale for using group-based practices to encourage changes in behaviour and "energy management" to help improve the quality of life in MS. "We want people to feel more confident in making changes to manage their fatigue," she said.

    Group-based fatigue self-management programs have been shown to be effective when delivered in a face-to-face setting, but the effectiveness of delivering the same program by teleconference has not been established in a large trial.

    "We were getting many calls from patients who couldn't make it to our group, asking for a teleconference." After a small pilot trial indicated its potential, Finlayson designed a larger, randomized trial to test efficacy and effectiveness.

    She and her colleagues recruited 190 patients, mean age of 55, who were randomly assigned to a teleconference group and a control group that received no therapy. Patients had an average 15 years' disease duration.

    The teleconference group received a 70-minute session weekly for six weeks, delivered by an occupational therapist, while the control group was put on a waiting list for therapy after the trial.

    The training program focused on the strategic use of rest; communication with co-workers, family members and others; activity analysis and modification; and the importance of setting priorities and making active decisions about energy use. "A lot of people don't think about what they use their energy for," Finlayson said.

    Each patient received a telephone headset and a training manual, and called in to a toll-free number. Each session consisted of a structured discussion led by the therapist, who responded to patient questions and comments and facilitated exploration of the week's topics. Each patient received homework for the next session.

    Outcome measures included the Fatigue Impact Scale and the Short Form Health Status Survey (SF-36), including both physical and mental health composite subscores. Measures were administered at baseline, at the end of the study, and at six weeks, three months, and six months poststudy.

    Fatigue severity was improved in both the treatment and control groups. Treatment also improved physical health immediately after the intervention, and mental health by six weeks.

    The study's results were similar to what is seen with face-to-face treatment, Finlayson said, although with a slightly smaller effect size.

    On the other hand, she pointed out, patient demographics in the teleconference study was much more diverse in terms of age, race, geography, and education.

    Primary source: International Journal of MS Care

    Source reference:
    Finlayson M, et al "Teleconference-delivered fatigue management: Efficacy and effectiveness" International J MS Care 2010; 12(suppl1): 24

    Source: Medpage Today © 2004-2010 MedPage Today, LLC (08/06/10)

    MS fears at work incorrect, study finds

    MS Workplace StressAfter a decade with multiple sclerosis, Fiona Hall is all too familiar with the uncomfortable walk to the boss's office to talk about her disease.

    ''I've had the full gamut of reactions - from being supported to being sacked. So little is known about MS in the wider community, you are scared about how people are going to react,'' said Ms Hall, 57.

    A new survey reveals thousands of Australians with MS are putting off telling their employer about their disease for months or even years, fearing discrimination. As a result they are not dealing properly with the symptoms as they progress and many are forced to quit prematurely.

    ''Sixty-four per cent of people with MS are not in the labour force, that's far higher than for depression or diabetes,'' the lead researcher of the Living with multiple sclerosis longitudinal survey, Rex Simmons, said.

    ''These people are certainly capable of continuing to make a real contribution to the workforce if they continued to manage their MS.''

    Multiple sclerosis is an inflammatory disease of the central nervous system in which the nerve fibres in the brain and spinal cord progressively degrade, causing a range of symptoms such as muscle weakness, fatigue and chronic pain. The disease can be managed very effectively for many years with rest, medication and modifications to the home or workplace to accommodate reduced mobility.

    But Dr Simmons and his fellow researchers found that many employees with MS were leaving planning for these symptoms too late, meaning that when an attack came they could not cope. Many then chose to resign.

    ''This strong fear of discrimination, that you won't be promoted or that you'll be sacked, is preventing people from planning in advance with the employer and in some cases not telling their employer at all,'' he said.

    But the fear of discrimination was largely unfounded, the study found, with only 15 per cent of people leaving their jobs because they were sacked.

    The most common reasons given for leaving employment were fatigue (69.5 per cent), physical problems with legs and feet (43.8 per cent) or arms or hands (39.4 per cent), symptoms than can be managed with rest and medication.

    The survey also found that a large number of sufferers believed their position was at risk because their condition was preventing them from doing a good job. ''This fear is quite tragic,'' Dr Simmons said. ''The disease strikes when people are having children and balancing it with working. They are dropping out prematurely before they really need to and it's having a significant impact on their self-esteem and their lives.''

    Source: The Sydney Morning Herald  © 2010 Fairfax Media (27/05/10)

    Modafinil for treatment of MS-related fatigue

    MS FatigueAbstract

    OBJECTIVE: To review the efficacy and safety of off-label use of modafinil in the treatment of multiple sclerosis (MS)-related fatigue.

    DATA SOURCES: Literature was accessed via MEDLINE (1966-January 2010) and International Pharmaceutical Abstracts (1960-2010), using the medical subject heading terms modafinil, multiple sclerosis, and fatigue.

    STUDY SELECTION AND DATA EXTRACTION: All English-language, peer reviewed publications were analyzed for relevance. Studies appropriate to the objective were evaluated, including 3 open-label trials, 1 single-blind trial, and 2 randomized placebo-controlled trials.

    DATA SYNTHESIS: Fatigue symptoms, assessed by a variety of self-reported symptom scales, improved in each of the uncontrolled studies reviewed when participants with MS received modafinil 200 mg or less daily for up to 12 weeks. These benefits were not maintained, however, in one uncontrolled study when modafinil was increased to 400 mg daily.

    Of the 2 randomized, controlled trials, 1 study found that modafinil 200 mg once daily resulted in a reduction in fatigue symptoms measured by the Fatigue Severity Scale at 8 weeks. The other study found no difference in the reduction of fatigue symptoms, measured by the Modified Fatigue Impact Scale at 5 weeks, between the placebo group and patients who received modafinil 100-200 mg twice daily.

    The most common adverse reactions associated with modafinil use in all studies included gastrointestinal and central nervous system effects.

    CONCLUSIONS: Based on the available data, use of modafinil for the treatment of MS-related fatigue has demonstrated benefit in all uncontrolled studies but has conflicting results from 2 controlled studies. Modafinil is a reasonable therapeutic option in this patient population, although larger, long-term, randomized controlled studies are necessary to further elucidate the appropriate dose of modafinil, its effects on MS-related fatigue, and adverse effects associated with its use.

    Jamie N Brown PharmD BCPS1, Caroline A Howard PharmD2, Debra W Kemp PharmD BCPS CPS3

    1 Drug Information Specialist, Pharmacy Service, Durham Veterans Affairs Medical Center, Durham, NC 27705
    2 Pharmacy Practice Resident, Durham Veterans Affairs Medical Center
    3 Clinical Assistant Professor, Eshelman School of Pharmacy, University of North Carolina, Chapel Hill, NC; Clinical Pharmacist, Durham Veterans Affairs Medical Center

    Source: The Annals of Pharmacotherapy © 2010 by Harvey Whitney Books Company (17/05/10)

    Advanced multiple sclerosis and the psychosocial impact on families

    MS and FamiliesThis study explores family relationships and support needs when adapting to a relative's advanced-multiple sclerosis (MS) around transition into care.

    A multi-site qualitative study of relatives of people with advanced-MS was conducted.

    A purposive sample of 25 relatives was selected and interviewed either in the care home or participants' homes.

    Interviews were recorded, transcribed and analysed using grounded theory methodology and Atlas.ti 5.2 software.

    Data quality enhancement involved: a self-report questionnaire; triangulation and member-checking.

    Themes derived from the data were: information, communication and understanding; family relationships, roles and responsibilities; emotions, coping and support; life outlook and reflection.

    Provision of information and support for families around the transition into care appears to be inconsistent despite there being a need for family members to ask questions and discuss the impact of the condition.

    Relatives reported that as a family and as individuals they faced significant challenges and were in great need of support at times, but reflected that they would have found it very difficult to accept.

    Relatives were also often unsure what type of support would have helped.

    For care providers, there needs to be a shift from the traditional health care professional 'patient-centred' mindset towards more proactive family-centred approaches and steps to encourage this are articulated.

    Bowen C, Maclehose A, Beaumont JG.

    The Institute for Neuropalliative Rehabilitation, Royal Hospital for Neuro-disability, London SW15 3SW, UK.

    Source: Pubmed PMID: 20204981 (15/03/10) 

    Development of a patient reported outcome scale for fatigue in multiple sclerosis: The Neurological Fatigue Index (NFI-MS)

    MS Fatigue
    Fatigue is a common and debilitating symptom in multiple sclerosis (MS). Best-practice guidelines suggest that health services should repeatedly assess fatigue in persons with MS.

    Several fatigue scales are available but concern has been expressed about their validity. The objective of this study was to examine the reliability and validity of a new scale for MS fatigue, the Neurological Fatigue Index (NFI-MS).

    Method: Qualitative analysis of 40 MS patient interviews had previously contributed to a coherent definition of fatigue, and a potential 52 item set representing the salient themes.

    A draft questionnaire was mailed out to 1223 people with MS, and the resulting data subjected to both factor and Rasch analysis.

    Results: Data from 635 (51.9% response) respondents were split randomly into an 'evaluation'and 'validation' sample. Exploratory factor analysis identified four potential subscales: 'physical', 'cognitive', 'relief by diurnal sleep or rest' and 'abnormal nocturnal sleep and sleepiness'.

    Rasch analysis led to further item reduction and the generation of a Summary scale comprising items from the Physical and Cognitive subscales. The scales were shown to fit Rasch model expectations, across both the evaluation and validation samples.

    Conclusion: A simple 10-item Summary scale, together with scales measuring the physical and cognitive components of fatigue, were validated for MS fatigue.

    Authors: Roger Mills, Carolyn Young, Julie Pallant, Alan Tennant

    Source: 7th Space Interactive © 2010 7thSpace Interactive (15/02/10)

    High unexpressed anger in Multiple Sclerosis patients linked to nervous system damage, not disease severity

    People with multiple sclerosis (MS) feel more than twice as much withheld anger as the general population and this could have an adverse effect on their relationships and health, according to a study published in the December issue of the European Journal of Neurology.

    Italian researchers assessed 195 patients with MS, using a range of scales that measure anger, depression and anxiety, and then compared them with the general population.

    They were surprised by the results, which showed that while patients experienced almost twice the normal level of withheld anger and exerted low levels of control on their anger, their expressed anger levels were similar to the general population.

    This, together with the fact that the elevated withheld anger levels were not related to the severity of the patients' MS, suggests that these inconsistent changes were caused by nervous system damage, rather than an emotional reaction to the stress of the disease.

    "We believe that the higher levels of withheld anger shown by the study subjects is due to demyelination, loss of the substance in the white matter that insulates the nerve endings and helps people receive and interpret messages from the brain" explains lead researcher Dr Ugo Nocentini from the IRCCS S Lucia Foundation in Rome.

    "The way we process anger is controlled by complex interconnections between the subcortical and cortical systems, notably the amygdale and basal ganglia and the medial prefrontal cortex. We believe that the demyelination process that causes the root symptoms of MS also disrupts the pathways that control how we deal with withheld anger."

    The patients who took part in the study comprised 150 with relapsing-remitting MS and 45 with progressive MS. More than two-thirds (68 per cent) were women, the average age of the participants was 40 and the average time since diagnosis was 11 years.

    Researchers evaluated the participants using the State Trait Anger Expression Inventory, the Chicago Multiscale Depression Inventory and the State Trait Anxiety Inventory.

    The researchers then looked at age and sex-matched subjects in the general population and identified the levels of anger experienced by the 25 per cent of people with the highest scores.

    They found that MS patients:

    •Were more than twice as likely to experience high levels of withheld anger, with 60 per cent of patients recording the same high levels as the top 25 per cent of the general population.
    •Exerted a low level of control on their anger, with just 11 per cent of patients reporting the same high levels of control compared to the top 25 per cent of the general population.
    •Were about the same as non MS patients when it came to expressed anger, with 30 per cent of patients reporting the same high levels as the top 25 per cent of the general population.
    During the study the authors also compared the anger scores against selected demographic and clinical characteristics and found they were independent of age, education, disease duration and course, disability and fatigue severity. The only notable difference was that women reported higher levels of current anxiety.

    "Our findings clearly show that anger characteristics in MS patients differ from those observed in the general population and the overall results surprised the research team" concludes Dr Nocentini.

    "For example, patients reported low levels of anger control and high levels of withheld anger, yet the scores for expressed anger were similar to those of the general population.

    "We would have expected greater consistency between withheld and expressed anger and higher levels of expressed anger as a consequence of low anger control."

    The authors conclude that damage to the fibres in the areas of the brain where anger issues are processed is the most logical explanation. They also say the findings have important implications for clinical practice.

    "Anger disrupts interpersonal relationships and this is particularly true for withheld anger, which might go unrecognised by other people" says Dr Nocentini. "Witheld anger has been reported to be associated with physical problems, in particular high blood pressure and vascular disorders, and may have a negative effect on the general health of MS patients.

    "Because withheld anger has no, or few, overt manifestations, and is unlikely to be recognised by clinicians or reported by patients, it is important that MS patients are asked if they experience abnormal anger."

    Source: Science Daily © 1995-2009 ScienceDaily LLC (24/11/09)

    Gender disparity in the rate of partner abandonment in patients with MS or cancer

    Partner AbandonmentA woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient, according to a study that examined the role gender played in so-called "partner abandonment." The study also found that the longer the marriage the more likely it would remain intact.

    The study confirmed earlier research that put the overall divorce or separation rate among cancer patients at 11.6 percent, similar to the population as a whole. However, researchers were surprised by the difference in separation and divorce rates by gender. The rate when the woman was the patient was 20.8 percent compared to 2.9 percent when the man was the patient.

    "Female gender was the strongest predictor of separation or divorce in each of the patient groups we studied," said Marc Chamberlain, M.D., a co-corresponding author and director of the neuro-oncology program at the Seattle Cancer Care Alliance (SCCA). Chamberlain is also a professor of neurology and neurosurgery at the University of Washington School of Medicine.

    The study, "Gender Disparity in the Rate of Partner Abandonment in Patients with Serious Medical Illness," was published in the Nov. 15 issue of the journal Cancer. The other corresponding author is Michael Glanz, M.D., of the Huntsman Cancer Institute at the University of Utah School of Medicine.

    Why men leave a sick spouse can be partly explained by their lack of ability, compared to women, to make more rapid commitments to being caregivers to a sick partner and women's better ability to assume the burdens of maintaining a home and family, the study authors said.

    Researchers at three medical centers -- the SCCA, Huntsman and Stanford University School of Medicine -- enrolled a total of 515 patients in 2001 and 2002 and followed them until February 2006. The men and women were in three diagnostic groups: those with a malignant primary brain tumor (214 patients), those with a solid tumor with no central nervous system involvement (193 patients) and those with multiple sclerosis (108 patients). Almost half of the patients were women.

    Chamberlain said the study was initiated because doctors noticed that in their neuro-oncology practices, divorce occurred almost exclusively when the wife was the patient. The researchers enrolled groups of patients with other cancers and with multiple sclerosis to separate the impact of oncologic versus neurological disease. The results showed a stronger gender disparity for divorce when the wife was the patient in the general oncology and multiple sclerosis groups (93 percent and 96 percent respectively, compared to 78 percent for the primary brain tumor group).

    The study also found correlations between age and length of marriage and the likelihood of divorce or separation. The older the woman was the more likely her partnership would end. However, longer marriages remained more stable.

    Researchers also measured some health and quality of life outcomes among the patients who separated or divorced. They found that patients used more antidepressants, participated less in clinical trials, had more frequent hospitalizations, were less likely to complete radiation therapy and more likely not to die at home, according to the study.

    "We believe that our findings apply generally to patients with life-altering medical illness," the authors wrote. "We recommend that medical providers be especially sensitive to early suggestions of marital discord in couples affected by the occurrence of a serious medical illness, especially when the woman is the affected spouse and it occurs early in the marriage. Early identification and psychosocial intervention might reduce the frequency of divorce and separation, and in turn improve quality of life and quality of care."

    Source: Science Daily © 1995-2009 ScienceDaily LLC (11/11/09)

    Study looks at Multiple Sclerosis relapses and effects on disability

    MS MRIThe study is one of the first to examine how MS relapses affect people during different time periods of the disease.

    Research shows that 85 percent of people with MS begin by having the relapsing-remitting form of the disease and the majority of these people later develop secondary progressive MS. A relapse is defined in the study as worsening of neurological symptoms for more than 24 hours, without a fever or infection. Because relapse-related symptoms often improve within a few weeks, it's been unclear how much disability comes from relapses, and how much from progression.

    For the study, scientists reviewed the medical records of 2,477 people with MS who experienced relapses in British Columbia, Canada. The study looked at whether the participants had disability severe enough to require the use of a cane for walking and whether this was related to relapses occurring within five years, five to 10 years, or more than 10 years after onset of symptoms. The participants were followed for an average of 20 years. During that time, the group experienced 11,722 relapses.

    Scientists found that people who had a relapse within five years of disease onset were at a 48 percent higher hazard (a measure of relative risk) of needing a cane to walk within five years of disease onset than those who did not have an early relapse. Importantly, the impact of the early relapse lessened over time. Those with early relapse who did not need a cane after five years were at only a 10 percent higher hazard (a measure of relative risk) of needing one 10 years after disease onset than those without early relapses.

    "Our findings may represent an important message to people diagnosed with MS today. Those who have a history of relapses could potentially be offered reassurance that as time goes on, these relapses will have a diminishing effect on their everyday lives," said study author Helen Tremlett, PhD, with the University of British Columbia in Vancouver. "In addition, our study calls upon the need for new medications that target axonal degeneration, which is suspected of causing permanent disability, especially for people who have had MS for many years or who are older at diagnosis."

    The impact of relapses that occurred later, either at five to 10 or more than 10 years after the start of the disease, also waned over time and became insignificant after long-term follow up. Relapses in people under 25 had a longer impact on disability compared to those over 35 years.

    "There may be a longer window of opportunity for treating younger people with MS right away, changing the course of progression later on," Tremlett said.

    Source: Disabled World © Disabled World 2009 (06/11/09)

    Subjective fatigue is not associated with cognitive impairment in multiple sclerosis

    MS Fatigue


    Studies in multiple sclerosis (MS) report conflicting conclusions regarding fatigue and cognition, which may partly be due to the use of small sample sizes and frequent reliance on a cross-sectional approach.


    The ability to distinguish between these two disabling symptoms is necessary in order to properly assess and treat MS patients.


    In a retrospective analysis, we assessed the correlation between fatigue and neuropsychological (NP) testing using a cross-sectional (n = 465) and longitudinal approach (n = 69). Cognition was measured using a comprehensive battery called the Minimal Assessment of Cognitive Function in MS (MACFIMS), and fatigue was measured with the Fatigue Severity Scale (FSS). FSS scores were categorized as normal (4.0), borderline fatigue (4 < FSS < 5.0), and fatigued (5.0). Repeat assessments (n = 69) were categorized as improved or worsened by a change in FSS of either 0.5 or 1.0.


    MS patients had significantly higher FSS scores than normal controls (P < 0.001). No correlation was found between FSS and NP scores in either cross-sectional or longitudinal analyses. Fatigue was moderately correlated with depression, assessed using the Beck Depression Inventory Fast Screen (BDIFS) (r = 0.44, P < 0.001). Longitudinally, there was a medium correlation between change in FSS and BDIFS (r = 0.34, P = 0.001), but no significant differences on NP scores using either definition of change.


    We conclude that self-reported fatigue, while correlated with self-reported depression, is not significantly related to cognitive capacity in MS.

    SA Morrow - School of Medicine, The Jacobs Neurological Institute, State University of New York at Buffalo, Buffalo, New York, USA

    B Weinstock-Guttman - School of Medicine, The Jacobs Neurological Institute, State University of New York at Buffalo, Buffalo, New York, USA

    FE Munschauer - School of Medicine, The Jacobs Neurological Institute, State University of New York at Buffalo, Buffalo, New York, USA

    D Hojnacki - School of Medicine, The Jacobs Neurological Institute, State University of New York at Buffalo, Buffalo, New York, USA

    RHB Benedict - School of Medicine, The Jacobs Neurological Institute, State University of New York at Buffalo, Buffalo, New York, USA

    Source: Multiple Sclerosis, Vol. 15, No. 8, 998-1005 (2009) DOI: 10.1177/1352458509106213 (14/08/09)

    Study investigates experiences of partners of people with Multiple Sclerosis

    MS Partners

    A study has highlighted the impact that MS has on partners' lives and demonstrates the need for support and services for partners of people with MS.

    The small study recently published in the journal Multiple Sclerosis has concluded that partners of people in the early stages of MS report feeling isolated and helpless. The study involved conducting telephone interviews with 15 people whose partners were recently diagnosed with MS and asking them a series of broad open-ended questions such as "Can you start by telling me all about what you thought and felt when your partner was first diagnosed with MS?" The interviews covered aspects of participants' lives that ranged from feelings when their partner was first diagnosed to the impact of MS on various aspects of their lives and also with how they cope with these challenges.

    Partners of people in the early stages of MS reported a range of emotions from confusion and anxiousness before diagnosis to shock and helplessness after the initial diagnosis was made. Lifestyle changes included job and career changes, social implications, and financial issues caused by MS. Furthermore, participants reported lack of support and understanding surrounding the condition and changes to their relationship with their partner. Social isolation was a key theme along with loss of control and constant worry.

    This was one of the first studies to investigate the impact of MS on a partner that is not providing care and suggests that MS can have a negative impact on a relationship during the early stages of the condition. The results also indicate that the financial difficulties were common among partners of people with MS. Interestingly, the study concluded that the impact of MS on partners' lives was the same, whether they were caregivers or not.

    Lead author of the study, Angeliki Bogosian, said: "We know little about how illness affects a family member in the earlier stages of a disease. The use of in-depth interviews in our study allowed us to explore further partners' experiences. We were surprised to find that partners in a non-caring role reported such a negative impact of MS on their lives, especially on their social life."

    Source: Medical News Today © 2009 MediLexicon International Ltd (14/07/09)

    Responses to the acquisition and use of power mobility by individuals who have multiple sclerosis and their families

    Mobility Scooters

    PURPOSE: To develop an understanding of family members’ reactions to the acquisition of medical scooters by persons with multiple sclerosis (MS) from the perspectives of the end users and their family members.

    METHODS: Data were obtained through semistructured interviews with seven persons with MS using or considering power mobility and four of their family members.

    RESULTS: Three major themes emerged from the data. Recognizing the need for handicap scooters resulted from the interaction between multiple sclerosis progression and the participants’ desired performance. Family decision making and communication, insurance funding and approval, and the physical and social environment were just some of the factors affecting the process of Deciding and Obtaining the Power Mobility. Using Power Mobility resulted in positive, negative, and neutral outcomes.

    CONCLUSIONS: This study uncovered an overall lack of resources and some issues within the family environment, such as communication and decision making, both of which can negatively impact the acquisition and use of power mobility for persons with MS. Understanding these challenges may assist occupational therapists to facilitate this transition with their clients.

    Source: Thinking And Social Events © 2006 (18/06/09)

    Economic impact of early mobility impairment in people with Multiple Sclerosis

    MS Mobility

    People with multiple sclerosis (MS) experience reduced income and earning potential as their mobility impairment increases, according to data collected from more than 8,100 participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) database, the largest self-reported MS patient registry in the world. The data were presented at the American Academy of Neurology (AAN) 61st Annual Meeting in Seattle, WA.

    "Approximately half of people with MS will have mobility impairment within 15 years of their disease onset, and MS often affects people early in life during their most economically productive years. These data indicate that even minor mobility impairments contribute to the loss of productivity and income," said Timothy L. Vollmer, M.D., Director of the NARCOMS Project and Professor, University of Colorado Health Sciences Center. "People with MS typically develop increasing mobility impairment as their disease progresses, which can significantly impact their socioeconomic status, affecting their ability to stay in the workforce and to provide for their families. Unfortunately, many people with MS are then at risk to lose access to company-sponsored healthcare."

    Among the study's key findings were:

    - While there was increasing unemployment and drop in income as people experienced progression of mobility impairment, the greatest changes in income levels occurred when people with MS went from normal mobility to minimal mobility impairment.

    - Reduction in both full- and part-time employment was observed with increasing levels of mobility impairment.

    - The average age of respondents was 53.8 years old; approximately two-thirds (65.9%) reported being completely unemployed.

    - The effect of mobility loss on income appeared to be greater among people with higher levels of education.

    The NARCOMS registry is a self-reported registry for people with MS. Data for this study included responses from 8,180 people with MS who completed Fall 2006 and Spring 2007 NARCOMS surveys, including questions on demographics and socioeconomic status. The study incorporated a cross-sectional data analysis of the relationship between socioeconomic factors and disability scales as measured by: the Patient Determined Disease Steps (PDDS), a validated 9 point measure similar to the Expanded Disability Status Scale (EDSS), a widely-used measure of disease-related disability; the Mobility Subscale of Performance Scales, where 0 = no disability and 6 = total disability; and demographic information such as employment, health insurance status, education level, income level, marital status, gender and age.

    NARCOMS is a project of the Consortium of Multiple Sclerosis Centers (CMSC). This study was supported by Acorda Therapeutics.

    Source: Medical News Today © 2009 MediLexicon International Ltd (05/05/09)

    Study shows true economic cost of living with multiple sclerosis

    Study Results

    A study of people living with the effects of multiple sclerosis (MS) has shown the true economic cost of living with the incurable, life-long condition.

    The independent research is one of the largest ever studies into the financial impact of MS and has revealed that the cost of being diagnosed with MS is on average nearly GBP17,000 per person. Care provided informally by families accounts for more than 70% of this.

    For the 100,000 living with the condition, this works out to be a total expense to the economy of GBP1.4billion, making MS second only to tumours as the most costly brain condition across Europe.

    Worse still, the study found that among the nearly 2,000 people surveyed from across the UK, half said they had to leave work due to their MS, pushing the figure to more than GBP25,000 per person when lost employment is added.

    Daniel Berry, head of policy and campaigns at the MS Society, said: "This research shows the shocking cost of living with MS.

    "It has been proven to be economically viable to keep people with MS as healthy as possible and in work for as long as possible and this study shows how cutting corners in health and social care is counter productive.

    "At a time when the government is running headlong into even more debt, these figures underline the enormous costs of inaction. Long term investment in research and in support for carers would pay dividends for people living with MS and for the whole economy."

    The Costs of MS study analyses the economic cost, quality of life and disability associated with MS and the independent research was carried out for the MS Society by Dr Paul McCrone from Kings College London and published in the peer reviewed journal of Pharmacoeconomics.

    Dr McCrone said: "The costs associated with MS are substantial. Most of the service costs are hidden as they represent care provided by family members.

    "It is crucial that evaluations of any new treatments or forms of care should assess their impact on carer costs as well as the costs of statutory services."

    The study has shown that the cost of MS can be broken down as follows:

    Informal care GBP1,021 million (72%) Professional care GBP245 million (17.2%) Medication GBP115.5 million (8.1%) Aids and adaptations GBP37.1million (2.30%) Medical tests GBP5.7million (0.4%)  
    With bills for care from family and friends estimated to be worth more than a billion pounds alone and the cost of home adaptations running into tens of millions, it is no surprise that MS Society grants for financial advice and assistance are in high demand.

    Case studies

    Leonie from Derbyshire is married and has two children.

    She has lived with MS for almost 20 years and as a result of worsening symptoms had to give up her role as the main breadwinner in her household.
    She took early retirement aged 39 from her job as a school bursar as a result of the unpredictable MS. This means her family is in a much worse position financially, but her stress-related MS relapses have lessened.

    Fay from Nottinghamshire has a nine-year-old son who is her main carer.
    She was diagnosed with MS five years ago and two major relapses mean that she now has to work part time. She finds it hard to pay the bills and had to rely on her mother to fund an electric wheelchair that she needs to get up the hill on which she lives. Due to constantly feeling cold as a result her MS, Fay has the heating on continuously and has to do more washing due to continence issues related to her condition. Her electricity bills are always high because of the need to charge her electric wheelchair at night.

    Note:  The survey statistics are based on a large (1,942) sample, with a very good (48.9%) response rate  

    The McCrone study suggests that the average cost of MS is GBP16,794 per person. This increases to GBP25,310 for people of working age, when factoring-in the costs of lost employment - The survey demonstrated that people with MS in the UK have a relatively low quality of life, using the recognised QOL measurement  

    This work looks at the economic costs of MS, not the costs in terms of worry, discomfort and pain to people living with the condition  
    It is important to quantify the total costs of conditions such as MS, so that policy makers have the full information to work with when making policy decisions. This is especially relevant when assessments are made of new treatments that can people keep people as healthy as possible for as long as possible  

    The average respondent to the survey was a 54 year old married woman with adult children, retired due to ill health.   
    50% of the sample were retired due to ill health  
    21.3% were in work, but half of those were only part time  
    7.5% were unemployed   - compared to an average unemployment rate in 2007 of 5.4%.  
    9.5% retired and  
    8.8% housewife/husband   

    Source: MS Society (25/11/08) 

    Personal rehab helpful for multiple sclerosis

    Rehabilitation in MS

    Results of a study in the Journal of Neurology, Neurosurgery, and Psychiatry suggest that an individualised rehabilitation program effectively reduces disability in patients with multiple sclerosis (MS).

    "Persons with MS are expected to have a normal lifespan and live for many decades with a range of problems," Dr. Fary Khan, of the University of Melbourne, Australia, and colleagues write.

    In order to assess the effectiveness of  patients, the researchers conducted a study with 101 patients who were randomly assigned to an individualised program or standard care.

    Patients in the treatment group received comprehensive multidisciplinary rehabilitation over 12 months, which included intensive treatment aimed at patient education, health promotion, bladder retraining, and mobilisation. Data from 98 patients were available for analysis.

    Significantly reduced disability was seen in the individualised rehab group. Compared with patients who received standard care, those given individualised rehab showed greater overall functional independence as well as specific improvements in walking and self care.

    Overall, 70.8 percent of patients in the treatment group improved, compared with 13 percent of those in the standard care group. More patients in the standard care group also deteriorated over the study period.

    "The potential implication is that targeted rehabilitation programs in patients with MS are effective and patients should be referred for comprehensive assessment and rehabilitation treatment for specific disabilities (such as inability to walk, transferring skills, ability to self care, continence, etc.),"

    "These treatments should be individualised for each patient, and patients should be active participants in setting achievable goals with the therapy team and receive targeted therapy for specific disabilities over a set time frame," Khan added.

    "Our group is now looking at specific components of rehabilitation intervention such as type, intensity, and duration of specific therapies and modalities to determine what works within the 'black box of rehabilitation' in patients with MS," Khan commented.

    Source: Journal of Neurology, Neurosurgery, and Psychiatry, November 2008. (13/11/08)

    Fatigue in relation to perceived health: people with multiple sclerosis compared with people in the general population

    Fatigue is not only a complex phenomenon accompanying different illness conditions but is also a common complaint among individuals in the general population. Among individuals diagnosed with the chronic neurological disease multiple sclerosis (MS), one-third describe fatigue as the very first symptom, however it is invisible to others.

    When adopting an action-theoretic approach to health, fatigue may be considered to influence the individual's goals of life and subjectively perceived health.

    The aim of this study was to describe perceived fatigue in relation to perceived health among working-aged individuals diagnosed with MS (n = 155), and in a comparative group of individuals randomly selected from the general population living in the same geographical area (n = 190). A self-report questionnaire including the Fatigue Impact Scale, a checklist of six symptoms, questions covering perceived health and levels of and perceptions of fatigue was used for the data collection.

    The responses on perceived health were dichotomized into two categories: 'good health' and 'ill health'. Of the individuals with MS, 50% graded their perceived health as ill compared with 18% in the reference group (p < 0.001), and 68% graded fatigue as one of their worst symptoms compared with 21% in the reference group. In both groups, higher presence of symptoms and impact of fatigue in daily activities correlated negatively to perceived health.

    Compared with the individuals in the reference group, the individuals with MS reported higher impact of fatigue in physical areas in both the category of 'good health' (p < 0.001) and 'ill health' (p < 0.01).

    The perceived impact of fatigue was mirrored in increased problems in social and family activities. In conclusion, individuals with MS perceive fatigue as one of their worst symptoms three times as often as individuals in the general population. However, individuals with MS probably also adapt themselves or shift in their response to fatigue more than individuals in the general population.

    Source: Pubmed PMID: 18840223 (10/10/08)

    The impact of stressful life events on risk of relapse in women with multiple sclerosis


    PURPOSE: The aims of this study were first, to examine the general relation between stressful life events (SLEs) and clinical relapses in women with multiple sclerosis (MS) and second, to investigate the relations of the specific stressor attributes of duration, type, and severity on MS exacerbations.

    METHODS: Twenty six ambulating women with relapsing-remitting MS were followed-up for a mean of 56.3weeks. Patients documented SLEs weekly in self report diaries which were then collected at regular pre-scheduled clinic visits every 4weeks. SLEs were classified as short-term if they had subjectively no lasting effect and long-term if they had a subjectively felt psychological impact that lasted at least 10-14days after the event. The severity of SLEs was determined using the Recent Life Change Questionnaire.

    RESULTS: Experiencing three or more SLEs, during a 4-week period, was associated with a 5-fold increase of MS relapse rate (95% CI 1.7-16.4, p=0.003). The presence of at least one long-term SLE was associated with three times (95% CI 1.01-9.13, p<0.05) the rate of MS exacerbation during the following 4weeks. There was no significant association between the severity (95% CI 0.99-1.01, p>0.05) or the type (chi(2)=7.29, df=5, p>0.05) of stressor and the risk for relapse.

    CONCLUSION: Ambulatory women with relapsing-remitting MS who experience cumulative SLEs may be at a greater risk for relapse. Duration is the only stress attribute that seems to increase the risk for relapsing in contrast to stress type and stress severity that were not found to interact with MS exacerbation.

    Mitsonis CI, Zervas IM, Mitropoulos PA, Dimopoulos NP, Soldatos CR, Potagas CM, Sfagos CA.

    1st Department of Psychiatry, Athens University Medical School, Eginition Hospital, 7, Metamorfoseos Street, GR-15234 Halandri, Athens, Greece.

    Source: Pubmed PMID: 18778921 (01/10/08)

    Perceived needs and satisfaction with care in people with multiple sclerosis: a two-year prospective study

    Caring in MS

    Considering the costs of multiple sclerosis (MS), it is crucial that the health-related services supplied are in accordance with needs as they are perceived by people with MS (PwMS). Satisfaction with care is related to quality of care and can provide health care providers with the means for improvement.

    The aim was to explore the perceived needs and satisfaction with care amongst PwMS over a two-year period, also taking sex and disease severity into consideration.

    Methods: The sample consisted of 219 outpatients at a MS specialist clinic. Data on perceived needs and satisfaction with care were collected every six months using a questionnaire which included various dimensions of care.

    The data was analysed for the whole sample and on an individual level, as well as in subgroups with regard to sex and disease severity.

    Results: There were no statistically significant variations in the proportion of PwMS with perceived needs concerning different health-related services during the study period.

    However, individual variations were found with regard to both perceived needs and satisfaction with care. Few PwMS perceived a continuous need for a specific service.

    However, the majority perceived a need for rehabilitation, assistive devices, transportation service for the disabled, psychosocial support/counselling and information on social insurance/vocational rehabilitation at least sometimes. Severe MS was associated with a greater perceived need for almost all the services studied and women experienced a need for psychosocial support/counselling to a greater extent than men.

    In relation to the different categories of health care staff, PwMS were most satisfied with nurses with regard to all dimensions of care. They were least satisfied with the availability of psychosocial support/counselling; and information about social insurance/vocational rehabilitation.

    Conclusions: Despite the large proportion of individuals with mild disease severity in our sample, a considerable number of needs were identified of which many, on an individual level, varied over time.

    Key services demanded by PwMS were identified. Also the level of satisfaction with care varied and areas with a potential for improvement were identified such as the availability of rehabilitation services including an increase in the supply of psychosocial support and counselling.

    Author: Charlotte Ytterberg, Sverker Johansson, Kristina Gottberg, Lotta Widen Holmqvist and Lena von Koch : BMC Neurology 2008, 8:36

    Source: 7thSpace Interactive © 2008 7thSpace Interactive (29/09/08)

    Experiences of diagnosis and treatment among people with multiple sclerosis

    RATIONALE, AIMS AND OBJECTIVES: The aim of this qualitative study was to examine patients' experiences of being diagnosed with multiple sclerosis (MS), the information that they were given at this time, subsequent treatment and its impact on their lives.

    METHOD: Data were collected through semi-structured interviews with 24 people with MS. The use of interviews allowed participants' experiences to be explored in depth. Participants were recruited by the MS Society through membership details and through a press release in a local newspaper. Telephone interviews lasted between 30 and 60 minutes, were tape-recorded and transcribed verbatim. Data were analysed using thematic content analysis.

    RESULTS: The majority of participants were female (n = 17), with ages ranging from 35 to 72 years. Disease duration ranged from 1 to 37 years. Many participants' diagnosed before and after 2000 had experienced long delays in diagnosis. At the point of diagnosis, participants had to make sense of and understand their diagnosis often with insufficient support. Some participants expressed anger about the way they had been given their diagnosis. Many felt they had not received sufficient information about their illness at this time and had responded by conducting their own searches for information to satisfy this need.

    CONCLUSION: Improving the way in which doctors communicate with patients experiencing diagnostic delay and at the point of diagnosis deserves further study, in order to avoid later adjustment problems.

    Edwards RG, Barlow JH, Turner AP.
    Self-management Programme, Applied Research Centre in Health and Lifestyle Interventions, Coventry University, Coventry, UK.

    Source: Pubmed PMID: 18373567 (28/07/08)

    Multiple Sclerosis patients may be at higher risk for Restless Legs Syndrome

    People with multiple sclerosis are at a greater risk than the general population for developing restless legs syndrome (RLS), a new Italian study suggests.

    "This is important, because RLS is one of the symptoms that can seriously affect an MS patient's quality of life, even more than a lot of other problems MS patients face," said lead researcher Dr. Giovanni Cossu, a neurologist at Brudzu Hospital in Cagliari, Italy. "Therapies for RLS such as dopamine agonists are normally very effective and can restore this quality of life, " he added.

    Cossu and his colleagues were expected to present their findings this week at the Movement Disorder Society's International Congress of Parkinson's Disease and Movement Disorders, in Chicago.

    The authors delved into a possible association between MS and RLS by analyzing questionnaires completed by a little more than 200 Italian male and female MS patients throughout 2007, as well as a similar number of people without MS.

    Those indicating symptoms of possible RLS were further examined by a neurologist.

    According to the study, almost 15 percent of the MS patients were diagnosed with RLS, while less than 3 percent of those without MS had the syndrome.

    Based on these results, MS patients run a significantly higher risk for RLS than the general population, the team concluded. They said MS should be "definitively" noted as being highly associated with RLS.

    Cossu said that further research -- focused on crunching MRI and neurological data -- is ongoing in order to "better define the clinical profile of those MS patients who are also likely candidates for RLS."

    However, Dr. John Richert, executive vice president of research and clinical programs with the National Multiple Sclerosis Society, New York City, expressed some reservations about the findings.

    "A lot of people with MS have involuntary movement of the legs, related to spasticity and jerks during sleep," he observed. "So, my question would be whether or not there is any confusion on the part of the investigators as to what is actually RLS versus what is the kind of abnormal movement that MS patients can have that is not RLS? And so, it would be important to see this study replicated by MS experts to be sure what were looking at."

    "But if we assume that this finding is, in fact, accurate, then the obvious message would be that health care professionals taking care of patients with MS need to be alert to the possibility that their patients may be experiencing symptoms of RLS," added Richert. "And be ready to apply the appropriate therapeutic options."

    Source: HealthDay Copyright © 2008 HealthDay.(30/06/08)

    Injurious falls among middle aged and older adults with multiple sclerosis

    OBJECTIVE: To determine the prevalence of, and risk factors for, receiving medical attention for a recent injurious fall among middle-aged and older adults who have multiple sclerosis (MS).

    DESIGN: Survey.

    SETTING: United States.

    PARTICIPANTS: Seven hundred people with MS, age 55 years or older and living in the United States, were randomly selected from the North American Research Committee on Multiple Sclerosis Registry and invited by mail to participate in the study. A total of 354 people, aged 55 to 94 years, completed the survey.

    INTERVENTIONS: Not applicable.

    MAIN OUTCOME MEASURES: Participant's self-report regarding receipt of medical care for a fall-related injury (received care within the past 6mo,>6mo ago, or never).

    RESULTS: More than 50% of study participants reported injurious falls; 12%, in the 6 months before the interview. Proportional odds models were used to identify factors associated with increased odds of receiving medical attention for a fall-related injury within the past 6 months. Compared with study participants who reported receiving medical attention for a fall-related injury more than 6 months ago or never, participants who reported receiving medical attention for a fall-related injury within the past 6 months were more likely to report fear of falling (odds ratio [OR]=1.94; 95% confidence interval [CI], 1.27-2.96) and osteoporosis (OR=1.65; 95% CI, 1.03-2.62).

    CONCLUSIONS: Injurious falls were commonly reported by survey participants. Findings suggest that management of fear of falling and osteoporosis are important components of comprehensive fall-injury prevention programs for people aging with MS.

    Peterson EW, Cho CC, von Koch L, Finlayson ML. Arch Phys Med Rehabil 2008; 89(6): 1031-7.
    Affiliation: Department of Occupational Therapy, University of Illinois, Chicago, IL 60612-7250, USA. DOI: 10.1016/j.apmr.2007.10.043

    Source: SafetyLit © 2008, Elsevier Publishing(23/06/08)

    Effects of inpatient rehabilitation in multiple sclerosis patients with moderate disability

    The aim of this study was to evaluate the effects of 3 weeks of inpatient neuro-rehabilitation for multiple sclerosis (MS) patients with moderate disability and to determine the clinical usefulness of different outcome measures. Rehabilitation consisted of physiotherapy, occupational therapy and consultation by speech therapist, social worker and psychologist.

    Improvements were seen in the health-related quality of life, in physical measures such as mobility and standing balance, walking speed and hand/arm dexterity.

    In multiple sclerosis patients improvements were seen after 3 weeks of inpatient rehabilitation in motor functions, some aspects of HRQoL and disability.

    T. Vikman; P. Fielding; B. Lindmark; S. Fredrikson

    Advances in Physiotherapy, 2008, 10(2), 58 - 65 (27/05/08)

    Loss of Mobility Found to Impact Quality of Life and Emotional and Financial Health of Most People Living with Multiple Sclerosis

    Two new complementary surveys provide groundbreaking data on the impact of walking impairment on people living with multiple sclerosis, revealing challenges related to quality of life, family relationships, independence, work, financial security and other areas.

    The symptoms of multiple sclerosis (MS) that affect mobility have a significant impact on quality of life, safety, and financial and emotional health among many people living with MS, according to the results of two 2008 surveys conducted by Harris Interactive on behalf of Acorda Therapeutics, Inc. and the National MS Society. The findings, gathered from interviews conducted among representative samples of 1011 people living with MS and 317 care partners, provide new data related to the impact of mobility loss and walking difficulty on different aspects of daily life for people with MS.

    Among people with MS surveyed, almost two-thirds (64%) experience trouble walking, the inability to walk or loss of balance at least twice each week. Of those people with MS who report trouble walking, 94% find it at least somewhat disruptive to their overall daily life, with 63% finding it very disruptive or disruptive. Fully 70% of people with MS who have difficulty walking* report it to be the most challenging aspect of their MS. Despite these findings, 39% of the people with MS and 49% of the care partners who were surveyed report that they rarely or never discuss mobility issues with a physician.

    Among the many important conclusions we can draw from these studies is that they indicate we must educate more people with MS and care partners about the impact of mobility loss and the options now available to address mobility challenges, said Dr. Nicholas LaRocca, vice president, health care delivery and policy research, National MS Society.

    The studies also found that fatigue is a very common symptom of MS. Among people with MS, 76% indicate that they experience fatigue at least twice each week. Of those, 95% report that fatigue is at least somewhat disruptive in their daily lives, with 60% reporting that fatigue is either disruptive or very disruptive. Fatigue is also known to have an impact on mobility and balance for many people living with MS.

    Many people do not realize the extent to which symptoms such as fatigue can affect people living with MS. Physical fatigue is a very common symptom of MS that can also affect mobility and balance. This study clearly demonstrates that it is essential to assess the impact of multiple symptoms in MS in order to develop effective educational programs and treatment strategies, observed Dr. LaRocca.

    Fear of mobility loss is a major concern among people when they are first diagnosed with MS. The surveys found two of the most commonly cited concerns among people with MS when they are first diagnosed are restrictions on daily activity (78%) and the diminished ability to work (76%). Other findings include:

    A majority of people living with MS think that walking problems due to MS have some or a great deal of negative impact on:

    • the ability to carry out daily tasks, such as shopping or going to the bank (70%);
    • self esteem (69%);
    • and the ability to travel (66%).
    • 58%of people with MS who have difficulty walking say it caused them to miss common, significant life events, including 22% who missed a wedding and 26% who cancelled vacation plans.

    Of people with MS who have difficulty walking:

    • 74% report that family members had to take on more household responsibilities because of difficulty walking;
    • 68% find that getting around can be dangerous due to difficulty walking;
    • and 47% find that difficulty walking has increased the cost of their care.

    In addition to exploring the impact of diverse MS symptoms on the lives of people with MS and on care partners, the surveys also examined the tools that people with MS are using to deal with difficulty walking:

    • 86% of the people with MS who use a mobility device report they do so to maintain their independence and 54% because of frequent falls;
    • 92% of people with MS who use a mobility device report that using a mobility device is “worth it,” though 45% of people with MS report that they are or would be embarrassed about using a mobility device;
    • 36% of people with MS who use a mobility device report that they do not use a mobility device as much as they should.

    “These surveys provide important new insights about how walking disability affects the quality of life of people with MS, their families and other care partners. Examining walking disability from different perspectives can help provide a better understanding of its prevalence and impact. These findings, coupled with previous research on aspects of walking impairment such as the use of assistive devices, highlight the need to continue to develop new treatment options,” said Andrew Blight, Ph.D., chief scientific officer of Acorda Therapeutics.

    Mobility challenges are also found to have a profound impact on the careers and financial health of many people with MS and care partners:

    Among people with MS who are employed and who experience difficulty walking, 44% have had to take days off from work and 34% have had to work reduced hours because of difficulty walking.

    Fully 50% of people with MS who experience difficulty walking report that their living expenses have increased either a little (32%) or a lot (18%) as a result of mobility issues.

    Among care partners who are employed, 46% report their work has been negatively impacted, including 32% who have had to take days off as a result of their care giving responsibilities.

    “As someone who has lived with MS for over two decades now, I see that people with MS are living fuller and more active lives than ever before, but we clearly have a long way to go. For me, MS and especially mobility issues have had a direct impact on my ability to work and the cost of my care. These surveys shed new light on the challenges that thousands of us with MS are experiencing every day,” said Mimi Mosher, a patient advocate from Mechanicsville, VA, and a person living with MS who uses both a scooter and a wheelchair.

    The full results of the surveys will be presented at a special media briefing hosted by the National MS Society on April 8 in New York City. The surveys were sponsored by Acorda Therapeutics in collaboration with the National MS Society.

    *In this survey, mobility or difficulty walking was defined as having trouble walking or the inability to walk two or more times per week.

    About the Study

    The two surveys were conducted online within the United States by Harris Interactive of behalf of Acorda Therapeutics and the National MS Society between January 28 and February 25, 2008 including one survey among 1011 U.S. adults who had been diagnosed with multiple sclerosis and a separate survey among 317 U.S. adults who are currently somewhat or very involved with caring for a family member or friend with multiple sclerosis. No estimates of theoretical sampling error can be calculated; a full methodology is available upon request.

    Source: Acorda Therapeutics, Inc. (26/03/08)

    Multiple Sclerosis: Prognosis Better Than Expected

    The authors evaluated data on more than 5000 patients. 60% of MS patients aged 50 years could still walk a distance of 100 meters unaided, as could 40% of patients at age 60. These figures are better than previously assumed. This much more favourable prognosis has also been confirmed by other researchers. On the average, it takes 20 to 29 years from the time of diagnosis for 50% of a collective of MS patients to be able to walk no more than 100 meters. In earlier studies, this stage of disability was generally expected to be reached after only 15 years.

    According to the registry data, MS is diagnosed an average of 3.5 years after its clinical onset. For this reason, Flachenecker and coauthors stress that it is important for family practitioners and other physicians in the community to refer any patient with unexplained neurological deficits to a neurologist.

    The whole paper can be viewed here:

    Source: Dtsch Arztebl Int 2008; 105(7): 113-9 (03/03/08)

    A Randomized Controlled Trial of Cognitive Behaviour Therapy for Multiple Sclerosis Fatigue
    Background: The purpose of this study was to assess the efficacy of cognitive behaviour therapy (CBT) as a treatment for multiple sclerosis (MS) fatigue.

    Methods: A randomized controlled design was used where 72 patients with MS fatigue were randomly assigned to eight weekly sessions of CBT or relaxation training (RT). RT was designed to control for therapist time and attention. Participants were assessed before and after treatment, and at 3 and 6 months posttreatment. The primary outcome was the Fatigue Scale. Secondary outcomes included measures of stress, mood, and fatigue-related impairment.

    Results: Analysis was by intention-to-treat. A group by time interaction showed that the CBT group reported significantly greater reductions in fatigue across the 8 months compared with the RT group (p < .02). Calculated effect sizes for fatigue from baseline to the end of treatment were 3.03 [95% confidence interval, 2.22–3.68] for the CBT group and 1.83 [95% confidence interval, 1.26–2.34] for the RT group. Results also indicted that both groups showed clinically significant decreases in fatigue defined as fatigue levels equivalent or less than those reported by a nonfatigued healthy comparison group. There were no significant interactions between group and any of the secondary outcome variables, with both groups showing improvements over time on all measures.

    Interpretation: Both CBT and RT appear to be clinically effective treatments for fatigue in MS patients, although the effects for CBT are greater than those for RT. Even 6 months after treatment, both treatment groups reported levels of fatigue equivalent to those of the healthy comparison group.

    Kirsten van Kessel, PhD, PGDipClinPsych, Rona Moss-Morris, PhD, CPsychol, Ernest Willoughby, MBChB, FRACP, Trudie Chalder, PhD, DipBehavPsych, Malcolm H. Johnson, MA, DipClinPsych and Elizabeth Robinson, MSc

    From the Department of Psychological Medicine, University of Auckland, Auckland, New Zealand (K.v.K.); School of Psychology, University of Southampton, Highfield Southampton, UK (R.M.-M.); Auckland City Hospital, Neurology Department, Auckland, New Zealand (E.W.); Academic Department of Psychological Medicine, Guy’s, King’s and St Thomas’ School of Medicine, Weston Education Centre, Cutcombe Road, London (T.C.); Department of Psychological Medicine, University of Auckland, Auckland, New Zealand (M.H.J.); and Epidemiology and Biostatistics, University of Auckland, Auckland, New Zealand (E.R.).

    Source: Psychosomatic Medicine © 2008 by the American  Psychosomatic Society (15/02/08)

    Contribution of relapses to disability in multiple sclerosis.
    The impact of relapses on long-term disability in multiple sclerosis remains unclear; however some evidence suggests that relapses play an important role in determining subsequent prognosis.

    We report on outcome, prognostic factors for recovery and the contribution of relapses to the accumulation of fixed disability in a large series of patients with documented relapses.

    Two hundred and seventy nine relapses in 182 patients were assessed before, during and after relapse by expanded disability status scale and data analysed to assess degree of recovery. Factors affecting outcome were considered including sex, age and site of relapse. Mean EDSS prior to relapse was 3.73, during relapse 5.18 and post relapse 4.23. Mean interval to post relapse assessment was 127 days post relapse. Mean residual change in EDSS score (pre to post relapse) was 0.50 points. Overall 49.4 % of patients had a residual increase in disability post relapse of at least 0.5 EDSS points and 32.7 % had an increase of at least 1 point.

    No significant difference was observed in mean residual EDSS for sex, site of relapse or age at relapse or in the proportion of patients with a residual increase in disability of >/= 1 EDSS point post relapse. 14.4 % of patients had no increase in EDSS score during relapse compared to pre relapse.

    These results suggest that acute relapses are commonly associated with an objective worsening of disability in the majority of patients with MS and that recovery is incomplete in approximately half and not influenced by gender, age or site of lesion. Therapies which reduce relapse frequency and/or severity might therefore be expected to slow or prevent worsening of disability if initiated prior to the onset of more permanent damage.

    Hirst C, Ingram G, Pearson O, Pickersgill T, Scolding N, Robertson N.

    Source: PMID: 18204919 (31/01/08)

    Fatigue in multiple sclerosis: association with disease-related, behavioural and psychosocial factors

    A report, 'Fatigue in multiple sclerosis: association with disease-related, behavioural and psychosocial factors,' is newly published data in Multiple Sclerosis. According to recent research from Montreal, Canada, "We determined biopsychosocial correlates of general, physical, and mental fatigue in MS patients, by evaluating the additional contribution of potentially modifiable factors after accounting for non-modifiable disease-related factors. Fifty-three ambulatory MS patients, along with 28 normal controls were recruited for a cross-sectional study."

    "Subjects completed the Multidimensional Fatigue Inventory (MFI) and Fatigue Severity Scale. Potential correlates evaluated were: disease-related factors (disease duration and type, immunomodulating treatment, muscle strength, pain, forced vital capacity (FVC), respiratory muscle strength, body mass index, disability, fibromyalgia), behavioural factors (physical activity, sleep quality) and psychosocial factors (depression, stress, self-efficacy). Multivariate models were calculated for MFI General, Physical, and Mental Fatigue. Age-adjusted multivariate models with non-modifiable factors included the following predictors (p wrote D.A. Trojan and colleagues, McGill University, Montreal Neurological Institute.

    The researchers concluded: "Potentially modifiable factors account for a considerable portion of fatigue."

    Trojan and colleagues published their study in Multiple Sclerosis (Fatigue in multiple sclerosis: association with disease-related, behavioural and psychosocial factors. Multiple Sclerosis, 2007;13(8):985-95).

    Source: NewsRX Copyright 2007 (07/12/07

    Measures of Physical Functioning Predict Self-Reported Performance in Self-Care, Mobility, and Domestic Life in Ambulatory Persons With Multiple Sclerosis

    Paltamaa J, Sarasoja T, Leskinen E, Wikström J, Mälkiä E. Measures of physical functioning predict self-reported performance in self-care, mobility, and domestic life in ambulatory persons with multiple sclerosis.

    To determine the associations between clinically measured physical functioning variables and self-reported performance in mobility, self-care, and domestic life in ambulatory persons with multiple sclerosis (MS), using the International Classification of Functioning, Disability and Health (ICF) as a framework.

    Survey study.

    Community setting in Finland.

    A population-based sample of 120 ambulatory persons with MS (30 men, 90 women) with mean age 45.0±10.8 years (range, 20–71y), mean disease duration from symptom onset 12.3±8.8 years (range, 1–39y), and mean Expanded Disability Status Scale 2.8±2.0 (range, 0–6.5).

    Not applicable.

    Main Outcome Measures
    The primary dependent variables were self-reported performance in self-care, mobility, and domestic life from the Functional Status Questionnaire. The physical functioning variables were drawn from the ICF activities (n=9) and body functions (n=14) categories. Age- and sex-adjusted odds ratios from multinomial logistic regression were estimated for the physical functioning variables associated with activities of daily living (ADL) performance.

    Overall, of this cohort 31% reported difficulties or dependence in self-care, 52% in mobility, and 68% in domestic life. The most significant predictors of perceived difficulties or dependence in ADL performance were: (1) lower scores in the Box and Block Test; (2) lower Berg Balance Scale scores; (3) greater velocity moment when standing with eyes open; (4) slower ten-meter walk test times and shorter stride length at normal speed; and (5) shorter distance in the six-minute walk test.

    Perceived difficulties and dependence were most prominent in domestic life. In particular, measures of activities predicted difficulties in ADL performance. Monitoring of physical functioning should be extended to those independent MS persons reporting difficulties in ADL performance.

    Jaana Paltamaa MSc, PT a, d, , , Taneli Sarasoja MDb, Esko Leskinen PhDc, Juhani Wikström PhD, MDe and Esko Mälkiä PhD, PTd
    a Department of Physical Medicine and Rehabilitation, Central Hospital, Jyväskylä, Finland
    b Department of Neurology, Central Hospital, Jyväskylä, Finland
    c Department of Mathematics and Statistics, University of Jyväskylä, Finland
    d Department of Health Sciences, University of Jyväskylä, Finland
    e Department of Neurology, University of Helsinki, Helsinki, Finland.

    Source: Archives of Physical Medicine and Rehabilitation
    Volume 88, Issue 12, December 2007, Pages 1649-1657 (03/12/07)

    One-year follow-up to a randomized controlled trial of an energy conservation course for persons with multiple sclerosis.

    In this randomized controlled trial, 169 persons with multiple sclerosis were randomly assigned to an immediate intervention group or a delayed control group using a crossover design.

    The outcome measures (Fatigue Impact Scale and SF-36 Health Survey) were measured four times before and after courses. This study investigated whether the immediate benefits of a 6-week, community-based, energy conservation course for persons with multiple sclerosis were maintained at 1-year follow-up.

    We performed intent-to-treat and compliers-only analyses using mixed effects analysis of variance models. Results showed that the beneficial effects were maintained 1-year postcourse compared with immediate postcourse. In addition, there were significant improvements in all three subscales of the Fatigue Impact Scale and in four subscales of SF-36 Health Survey 1-year postcourse compared with precourse.

    Together, these results provide strong evidence that the beneficial effects of the energy conservation course taught by occupational therapists were maintained up to 1-year postcourse.

    Mathiowetz VG, Matuska KM, Finlayson ML, Luo P, Chen HY.

    aProgram in Occupational Therapy, University of Minnesota, Minneapolis bDepartment of Occupational Therapy, College of St Catherine, St Paul, Minnesota Departments of cOccupational Therapy (MC 811) dEpidemiology and Biostatistics, University of Illinois at Chicago, Chicago eHines VA Hospital, CSPCC, Hines, Illinois, USA.

    Source: Int J Rehabil Res. 2007 Dec;30(4):305-313 (14/11/07)

    Validity of performance scales for disability assessment in multiple sclerosis
    Researchers increasingly use self-reported health status assessments, but these require validation. Performance Scales (PS) is a self-report measure for multiple sclerosis (MS)-associated disability, assessing mobility, bowel, bladder, fatigue, sensory, vision, cognition, spasticity and hand function.

    The criterion validity of the total PS score was established using the Expanded Disability Status Scale (EDSS), but the construct and criterion validity of the individual subscales have not been established.

    We assessed the criterion and construct validity of the PS subscales. Forty-four patients with MS completed PS, and these criterion measurements: neurological examination (EDSS), the Multiple Sclerosis Functional Composite (MSFC), contrast acuity testing, and the Multiple Sclerosis Quality of Life Inventory.

    We assessed criterion and construct validity with Spearman rank correlations between PS subscales and the other measurements. PS correlated with the MSFC (r = -0.58, P < 0.0001). The mobility, hand, vision, fatigue and bladder subscales correlated with their criterion measures (r = 0.59—0.77, P < 0.0001). The sensory subscale correlated weakly with the sensory functional system score (r = 0.39, P = 0.01 ), and the cognitive subscale did not correlate with the PASAT (r = -0.17, P = 0.26).

    This study supports the criterion and construct validity of PS overall, and its mobility, hand, vision, fatigue, and bladder subscales. Further assessment of the cognitive, sensory and spasticity subscales is needed.

    Source: Multiple Sclerosis 2007; 13: 1176—1182. (30/10/07)

    Illness perception and health-related quality of life in multiple sclerosis
    Aims – A number of physical and psychological factors have been shown to affect health-related quality of life (HRQoL) in patients with multiple sclerosis (MS). Among these, the role of illness perceptions has not been established as an independent factor. This study, the first of its kind in an Australian population, aimed to use a large sample to determine the relative importance of individual factors to each domain of HRQoL, in particular the role of illness perception.

    Materials and methods – 580 patients with confirmed MS were assessed cross sectionally in a designated research clinic to determine the relative impact of physical factors (illness severity, duration, age, fatigue and pain) and psychological factors (mood, cognition and illness representations) on each domain of the SF-36.

    Results – Categorical regression analysis showed that a combination of physical and psychological factors predicted 38–71% of variance in HRQoL. Illness perception was shown to have an independent effect on HRQoL in MS. The Extended Disability Status Scale was a significant determinant in all domains except for mental health. Depression was less prevalent than anxiety, but had a greater effect on function.

    Conclusion – Illness perception is an independent factor contributing to HRQoL in people with MS. Individual domains of HRQoL are associated with different patterns of physical and psychological factors. In the domains of role and social function, activities most highly valued by patients with MS, depression, anxiety, fatigue and illness perceptions are key determinants, all of which have the potential to be improved through specific interventions.

    L. A. Spain, N. Tubridy, T. J. Kilpatrick, S. J. Adams, A. C. N. Holmes Illness perception and health-related quality of life in multiple sclerosis.

    Source: Acta Neurologica Scandinavica (OnlineEarly Articles). doi:10.1111/j.1600-0404.2007.00895.x (04/10/07)

    Kingston General Hospital publishes research in multiple sclerosis quality of care

    A new study, "Factors associated with health-related quality of life in multiple sclerosis," is now available.

    According to a study from Kingston, Canada, "Much research has gone into the assessment of function and health-related quality of life (HRQOL) in those with multiple sclerosis (MS). The Medical Outcomes Study 36-item short form (SF-36) has been widely used in this population but current recommendations are that it be supplemented with condition-specific measures such as the MS Quality of Life Inventory (MSQLI) and the MS Functional Composite (MSFC)."

    "The goal of the baseline component of this study was the measurement of generic and condition-specific HRQOL, and the identification of factors associated with these outcomes. HRQOL was assessed at the baseline phase of a longitudinal study. Participants completed the assessment during their regularly scheduled clinic visit. 300 of 387 eligible patients agreed to participate, for a response rate of 77.5%. Age ranged from 22 to 77 years, while duration of MS ranged from 1 to 47 years. Mean SF-36 scores were well below age-and sex-adjusted normative data. Only 240 completed the MSFC component. Higher EDSS, use of support services, pain medications, clinical depression and antidepressant use were associated with poorer HRQOL, while higher income and education were associated with better HRQOL. There is a substantial burden of illness associated with MS when compared to normative HRQOL data. This was more pronounced in physically-than in mentally-oriented domains," wrote W.M. Hopman and colleagues, Kingston General Hospital.

    The researchers concluded: "Assessment of HRQOL provides a valuable complement to the EDSS by providing information about the patient perception of function and HRQOL beyond that which can be obtained by physical assessment alone."

    Hopman and colleagues published the results of their research in The Canadian Journal of Neurological Sciences (Factors associated with health-related quality of life in multiple sclerosis. The Canadian Journal of Neurological Sciences, 2007;34(2):160-6).

    For additional information, contact W.M. Hopman, Kingston General Hospital, Clinical Research Centre, Kingston, Ontario, Canada.

    Source: NewsRx Copyright 2007, (18/07/07)

    Easier Access to Multiple Sclerosis Treatments Will Reduce Overall Healthcare Costs: MS Society Canada

    According to the Multiple Sclerosis Society of Canada early and easy access to MS treatment options has the potential to improve quality of life and significantly reduce healthcare costs.

    The cost of MS to the Canadian economy is estimated to be more than $1 billion per year.

    The commentary comes as a result of two MS-related articles published in this month's Canadian Journal of Neurological Sciences. MS is an auto-immune disease that affects 55,000 to 75,000 Canadians. Symptoms can vary greatly but include numbness, problems with vision, partial or full paralysis and cognitive deficits.

    The articles bring to light new healthcare access and quality of life data related to people living with MS. Compared to the average Canadian, people with MS:

    - consult a medical doctor nearly twice as frequently

    - are admitted overnight to a hospital 2.5 times more frequently

    - consult mental health professionals 2.6 times more frequently

    In an accompanying editorial, Dr. Luanne Metz, a professor of clinical neurosciences at the University of Calgary and a member of the MS Society's health research review committee, urged that barriers to appropriate treatment and care for people with MS be removed.

    Dr. Metz comments, "These studies imply that improving the health of Canadians with MS can reduce the societal cost of caring for them. This could include benefits derived from the use of existing treatments, but only if people with MS are given access to treatments early, before disability accumulates. To do this, we must reduce barriers to proven therapies which include access to experts, economic barriers and lack of knowledge about treatments."

    The MS Society of Canada recently won a major victory in securing easier access to MS therapies in Newfoundland and Labrador. Prior to the efforts of the MS Society, they were the only province in the country that did not provide universal drug coverage of MS therapies that can cost up to $40,000 per year. Now, so-called "co-pays" - or the portion that the person with MS must pay - have been reduced significantly. For example, a family with an income of $30,000/year will face a maximum co-pay of $1500, whereas previously this family would pay $19,600.

    Efforts like these, coupled with improved therapies and services for symptom management will improve quality of life and bring down healthcare costs in the form of reduced hospitalisation expenses.

    The studies also highlighted other societal costs:

    - employment rates in MS populations are lower than 50 per cent

    - a caregiver is needed by half of all people with MS

    - over 70 per cent of people with MS need assistance with one or more tasks

    - on average, those with MS have significantly impaired quality of life as compared to the general population

    MS is the most common neurological disease of young Canadians with an average age of diagnosis between 15 and 40. Canada has one of the highest prevalence rates of MS in the world at 240 per 100,000. The annual lifetime cost of the disease is estimated at $1.6 million per person.

    The two published studies were led by Dr. Sheri Pohar from the Institute of Health Economics in in Edmonton, and by Ms. Wilma Hopman and Dr. Don Brunet from Queen's University in Kingston. The Hopman & Brunet study was funded by the MS Society of Canada.

    Source : Multiple Sclerosis Society of Canada(24/05/07)

    Multiple Sclerosis Survey Highlights Need For Assessment Tool To Identify Gaps In Provision
    People with multiple sclerosis need much more practical help and better care support, according to a study published in the latest Journal of Advanced Nursing.

    Researchers from King's College London explored the aspirations of 445 patients with different levels of multiple sclerosis (MS), who were taking part in a wider study to evaluate MS specialist nurses.

    They believe that their findings could form the basis for developing an MS satisfaction tool, which could be used to assess quality of care in services.

    The tool could also identify the gaps in provision that still exist despite the MS guidelines issued by the National Institute for Health and Clinical Excellence, which advises the UK Government on health issues.

    29 per cent of those who took part in the survey said that medical treatment was their number one priority when it came to meeting their current needs, but 19 per cent specified socio-economic support, with 67 per cent of those specifying household adaptations, better transport provision and re-housing.

    The need for help with financial and employment problems was also identified.

    A further 18 per cent pointed to the need for enhanced care provision, including improvements in the availability, accessibility and continuity of health and social care provision.

    Respondents felt health care professionals needed greater knowledge about MS and how to manage it and wanted better co-ordinated services with one central point of contact. They also felt that specialist MS nurses had an important role to play.

    Nine per cent of respondents wanted more information about MS treatments and services and some felt that families and society needed to improve their understanding of MS and how it affects people.

    Seven per cent wanted better access to rehabilitation therapies, notably physiotherapy. Occupational therapy and rehabilitation therapies were also mentioned.

    Six per cent wanted non-professional care - including support with personal, home and child care - and a further three per cent needed help with psychological issues.

    "The aim of the study was to identify what people with MS needed most and to compare the responses between people with different levels of MS" explains lead researcher Dr Angus Forbes.

    "People with minimal levels of MS rated medical treatment as their highest priority, followed by enhanced care, as did people with severe MS.

    "Patients with mild MS also rated medical care first, with socio-environmental help and enhanced care in joint second place. But people with moderate MS, rated medical care in second place behind socio-environmental help."

    The 714 people taking part in the wider MS study were recruited from seven neurological centres across five English regions.

    435 responded to the question "What one thing would be most helpful in meeting your current needs" in the first questionnaire and 424 responded to the question in the second survey a year later. 270 people answered the question on both occasions.

    The average age of the respondents was just over 48 and 69 per cent were female. Average time since diagnosis was just over 11 years and 83 per cent of respondents lived with others.

    60 per cent had progressive MS, 29 per cent had relapse-remitting MS. Other forms of MS accounted for 11 per cent of the sample.

    More than one in three had moderate MS (35 per cent), followed by severe (28 per cent), mild (20 per cent) and minimal (17 per cent).

    "Since our research was carried out, the UK's National Institute for Health and Clinical Excellence has produced MS care guidelines which seem to echo the aspirations expressed by the MS patients who took part in our study. But a 2006 study suggested that little had changed, with few health authorities implementing the guidelines" says Dr Forbes.

    "Such deficits are not confined to the UK and have been reported in wider surveys across Europe."

    "Our survey, which was funded by the MS Society for Great Britain, shows very clearly that people's needs change as their MS develops.

    "Developing a needs assessment tool specifically for MS would be an important first step in ensuring that healthcare meets those individual and changing needs, as it would show how well care is currently being provided, identify gaps in provision and point to areas for future research."

    What people with multiple sclerosis perceive to be important to meeting their needs. Forbes et al. Journal of Advanced Nursing. 58.1, 11-22.

    Source: Medical News Today © 2007 MediLexicon International Ltd

    Study Being Used Worldwide to Improve Lives of People with MS
    An RTI International study of programs and policies needed to enhance the quality of life for people with multiple sclerosis (MS) is being used around the world to benefit those with the disease.

    One year after its launch, "Principles to Promote the Quality of Life of People with Multiple Sclerosis" has been downloaded almost 20,000 times, an average of 54 times per day, by individuals and organisations worldwide.

    The study, which was conducted by RTI for the Multiple Sclerosis International Federation, established a set of “Quality of Life Principles” that are being adopted to promote and advocate programs that enhance quality of life for people with MS.

    "Many people with MS have difficulties meeting society's fast-paced demands, particularly at work," said Michael Trisolini, RTI's co-principal investigator for the study. "The Quality of Life Principles are having a significant impact by helping MS societies to enhance the programs and services they offer as well as providing individuals with the tools they need to advocate for better policies that will help improve their lifestyles."

    As a result of the report, the U.S. National MS Society is revamping its measurement systems so that all activities, programs and services address one or more of the Quality of Life Principles. The society also is using the principles as a guide and foundation for its strategic direction.

    During the past year, the Multiple Sclerosis International Federation and national MS societies have circulated the 34-page report worldwide to governments, for-profit and nonprofit health and social service providers, employers and advocacy organisations. The report is available in English, Spanish, French and German.

    The Quality of Life Principles include providing scheduling flexibility and adaptive technology in the workplace and in educational settings; improving the accessibility of public buildings and public transportation systems; and providing more specialised training for family members and other caregivers of people with MS.

    About 2.5 million people worldwide have MS, a chronic and, at times, disabling disease of the central nervous system. Symptoms include problems with muscle control and strength, vision, fatigue, balance, sensation and mental function.

    To arrive at the principles, RTI co-principal investigators, Trisolini and Joshua Wiener, Ph.D., and their research team, conducted interviews with experts globally, including neurologists, other health care providers, administrators of MS programs and people with MS. They also carried out a comprehensive review of evidenced-based literature on the disease.

    About RTI International
    RTI International is dedicated to conducting research and development that improves the human condition by turning knowledge into practice. With a worldwide staff of more than 2,500, RTI offers innovative research and technical solutions to governments and businesses worldwide in the areas of health and pharmaceuticals, education and training, surveys and statistics, advanced technology, democratic governance, economic and social development, energy, and the environment. The second largest independent nonprofit research organisation in the United States, RTI maintains nine offices in the U.S., five international offices, and one international subsidiary, as well as project offices around the world. For more information, visit

    Source: Newswise © 2006 Newswise. All Rights Reserved.

    Major New Study Demonstrates the Economic and Quality of Life Burden of MS

    Findings from the largest ever study on the effects of Multiple Sclerosis (MS) indicate that as the disease progresses, it results in a growing and significant burden on patients, families, national healthcare systems and society at large.

    The average MS patient loses the equivalent of 3-4 months of full quality of life every year, while the economic burden of MS due to health care costs and productivity losses range from EUR 18,000 per year in early disease to EUR 62,000 per year in late disease.

    The study has been published online in the Journal of Neurology, Neurosurgery and Psychiatry. It points to the importance of treatments that will slow the progression of the disease during its early stages, thereby delaying or avoiding the accumulation of costs and burdens associated with the higher levels of MS disability.

    Study Findings

    The study, conducted by European Health Economics, involved 13,186 patients from nine European countries (Austria, Belgium, Germany, Italy, Netherlands, Spain, Sweden, Switzerland, United Kingdom) who represented all levels of MS severity. It was conducted in collaboration with national MS societies, scores of MS clinics and leading European health economists and was funded by Biogen Idec and Elan. The questionnaire completed by the patients collected data on their utilisation of healthcare services, employment and health-related quality of life.

    Major study findings include:

    Healthcare Costs

    • Costs increase significantly with worsening disease. Patients with severe disability from MS were found to have total costs that are three- to four-fold those of their counterparts in the early stages of MS disability.
    • The mean annual per patient cost was approximately EUR 18,000 for patients with mild disease, EUR 36,500 for moderate disease and EUR 62,000 for severe disease. The health care costs associated with an MS relapse, a period of increased disease activity, was between EUR 2,800 and EUR 4,000 per relapse.
    • National healthcare covered approximately half the cost of care in most countries, with the remaining costs being absorbed by the patients and their families.

    Workplace Productivity

    • The largest economic burden from MS was due to diminished workplace productivity, representing approximately half of the total societal cost of MS. The percentage of patients who were employed ranged from 24 to 41%, while 33 to 45% had been forced into early retirement.

    Patient Quality of Life

    • Each year, the average MS patient was estimated to have lost nearly one-third of a quality adjusted life year when compared to the general population. This loss is equivalent to 3-4 months of life in perfect health each year.
    • The impact of increasing levels of MS disability on health-related quality of life was strikingly similar across the countries and demonstrated the significant effect of MS on patients' physical and emotional well-being.

    The full report is currently available online at It will be available soon in a printed issue of the Journal of Neurology, Neurosurgery and Psychiatry.

    Source: Source: European Health Economics

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