Quality of life
Access to treatment and services varies remarkably for EU citizens diagnosed with multiple sclerosis, depending on which country they live in, according to a survey by the European Multiple Sclerosis Platform (EMSP).
The MS Barometer 2011, which has measured and compared wellbeing and quality of life for people living with multiple sclerosis in 33 European countries, including 26 EU member states, shows huge disparities in terms of access to treatment, therapies and employment.
While Germany overall came on top as the best country for people with multiple sclerosis in the EU, scoring 207 points, ahead of Sweden (184 points) and Austria (178), Bulgaria scored the fewest points (62 points), followed by Poland and Lithuania with 87 and 88 points, respectively.
Maggie Alexander, CEO of the EMSP, told EurActiv that the impact of having a condition such as multiple sclerosis is much more severe in countries that fail to provide the optimal treatment and services to help people maintain control of their disease, including remaining economically independent and fully participate in society.
“The EMSP will continue to drive forward effective collaborations with EU institutions and all those that share our commitment to escalate progress in the vital areas of research, healthcare and employment,” Alexander said.
“This will help to reduce the health inequalities that are faced by far too many of the nine million people in Europe living with neurodegenerative conditions,” EMSP’s CEO continued.
Multiple sclerosis is a potentially disabling disease. It strikes the white matter of the brain and spinal cord and affects the rest of the nervous system. According to the EMSP, multiple sclerosis has great consequences for society as more than one million people in Europe are affected indirectly through their role as carers and family members.
Younger people between 20 and 40 are the ones who are the most often diagnosed with multiple sclerosis. Women are diagnosed twice as often as men.
More than 120,000 people with multiple sclerosis live in Germany. This is more than in most other European countries. The EMSP said that Germany, with its long tradition of universal healthcare, provides strong protection for all disabled people.
When it comes to multiple sclerosis, the treatment in Germany is carried out by inter-disciplinary teams. The full cost of disease-modifying drugs is reimbursed by government without limits on duration of treatment and the treatment of symptoms is also fully covered. People also have unlimited access to rehabilitation.
Another positive fact about Germany is that good access to new medication and that specialised palliative care are offered while the country also scores high on research.
Germany also scores best in employment and job retention for people with multiple sclerosis, the barometer confirmed. This is due to protective legislation and flexible working conditions. 32% of people with MS are employed full time and 13% part time. An early retirement pension fund also exists.
Restricted access to care
At the same time, an EU country with low government spending on healthcare, like Poland, provides poorer treatment and quality of life for people with multiple sclerosis.
Poland has a very high ratio of people with multiple sclerosis, 120 in 100,000 people affected. Around 500 people are newly diagnosed each year. However, access to disease-modifying treatment provided is restricted. For example, after five years, access is transferred to the next person on the waiting list.
And though access to therapy for treating symptoms is relatively high, state reimbursement is modest with less than one-third of people having access to rehabilitation services.
Concerning employment, Poland fairs well due to strong laws against discrimination in the workplace. The country also scores well on empowerment of people with multiple sclerosis.
Lacking EU response
In September 2012, the European Parliament passed a written declaration initiated by the Romanian MEP Petru Luhan from the European People’s Party (EPP) on tackling multiple sclerosis in the EU, endorsed by more than 400 MEPs, calling for the European Commission and member states to enhance equal access to quality care.
But this commitment was not followed up with any concrete measures to reduce the inequalities for people with multiple sclerosis across the EU.
The EMSP said that the EU should live up to its declaration by addressing four major problems. First of all, the EU needs a closer scientific collaboration and comparative research on multiple sclerosis.
Secondly, there should be equal access to treatment and flexible employment policies for people with chronic neurological disorders such as multiple sclerosis.
Thirdly, there should be equal access to quality care, the EMSP said, for example by using certified educational training tools and lastly, collection of patient data at national level is encouraged in order to compare best practices.
EurActiv has asked Luhan as well as other MEPs, who have previously been involved with issues related to multiple sclerosis, for an interview. Unfortunately, they all declined.
Source: Euractiv © 1999-2014 EurActiv.com PLC (20/02/14)
Measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability, a new study suggests.
In people with multiple sclerosis (MS), the immune system damages the protective myelin sheath around the body's nerves.
"We already know that the timed 25-foot walk test is a meaningful way to measure disability in MS," study author Dr. Myla Goldman, of the University of Virginia in Charlottesville, said in a news release from the American Academy of Neurology. "Our study builds on that research by providing a clearer idea of how walk time can provide information about how a person's disease progression and disability impacts their everyday activities and real-world function."
The study included 254 MS patients who were timed as they walked 25 feet. Those who took longer than 6 seconds to walk that distance were more likely to be unemployed, to have changed jobs because of MS and their walking ability, to use a cane, and to require help with daily activities such as cooking and house cleaning.
For example, 59 percent of those who took less than 6 seconds to walk 25 feet were employed, compared to 29 percent of those who took longer than 6 seconds. Just 43 percent of the faster walkers had changed jobs because of MS, compared to 71 percent of slower walkers.
Patients who took 8 seconds or longer to walk 25 feet were more likely to be unemployed, to use Medicaid or Medicare, be divorced and use a walker. They were more than 70 percent more likely to be unable to perform daily activities such as house cleaning, grocery shopping, laundry and cooking, according to the study published online Oct. 30 in the journal Neurology.
Based on the study findings, "we propose that a timed 25-foot walk performance of 6 seconds or more and 8 seconds or more represent meaningful benchmarks of MS progression," Goldman added in the news release.
Source: US News Health Copyright © 2013 U.S. News & World Report LP (31/10/13)
A new UK study has revealed that people with MS do not always report their relapses despite the domino effect on their health, financial security and support networks. The study also uncovered that inadequate patient reporting of relapses may bias views of clinicians on the adequacy of disease modifying treatments. Preliminary findings from the study presented at the 29th congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) have shown a worrying trend towards MS health professionals accepting a level of ongoing MS relapses as inevitable without considering alternative treatments, as well as significant underreporting of relapses by patients. Nearly half (46%) of respondents had experienced a relapse but did not report it.
The Novartis funded MS Pathways study led by Dr Martin Duddy, consultant neurologist at Royal Victoria Infirmary, Newcastle found that over a quarter of people had not reported their most recent relapse, despite two out of three employed respondents having to take time off work and 66% needing to call on their support network for help with simple daily tasks. The financial burden of relapses was striking, with a third of respondents reporting a reduction in family income, nearly half (48%) of respondents had to temporarily reduce their hours, whilst 8% had to permanently reduce their hours and 10% had to give up work entirely.
Dr Martin Duddy commented; "Even minor relapses have an impact on a patient's physical and psychological well being, as well as their financial well being. The uncertainty of not knowing when the next relapse might come can be a strain for many people. We need to have a clear picture of whether or not patients are having relapses, as they have an important role in assessing whether they need treatment and whether that treatment is working."
The main reasons cited for underreporting were that patients considered their symptoms too mild or did not feel there was anything healthcare professionals could do.
Over the past few years clinical opinion regarding relapses has begun to change, with a clear shift away from unquestioning acceptance of relapses, towards all relapses being considered a sign of clinical activity that merit discussion and action. The MS Pathways study provides further evidence to support the need for better systems to ensure full reporting of relapses so that MS healthcare professionals can make informed treatment decisions with their patients.
Amy Bowen, Director of Service Development at the MS Trust commented; "The MS Trust welcomes this important study. It is crucial that we improve reporting of relapses and ensure that people with MS receive the right information about recognising a relapse and the treatment that is available to help them manage its impact. No one should be coping with the burden and disruption of a relapse without the support of their MS team, particularly their MS specialist nurse."
MS is the most common neurological condition affecting young adults in the UK. It is estimated that over 100,000 people in the UK have MS - relapsing remitting MS (RRMS) is the most common form, affecting 80% of people.
Relapses are unexpected and can happen at any time. The impact of a relapse can last for weeks or months and the symptoms may range from loss of vision to spasm and mobility problems. Such symptoms can have a huge impact on family life, work and social activities, and the unpredictable nature of relapses can make it difficult for a person with MS to plan ahead with confidence.
The number of relapses experienced (annualised relapse rate) is one of four key measures used to assess the progression of a patient's MS, in addition to physical disability, lesion activity on MRI and brain volume loss as measured by MRI.
A team of MS healthcare professionals, including Dr Duddy are working together with Novartis to develop educational materials to support more effective reporting of relapses.
Source: Medical News Today © 2004-2013 MediLexicon International Ltd (08/10/13)
Multiple sclerosis (MS) patients rate their quality of life lowest with respect to their relationships with family and friends and activities of daily living, according to new research from Kantar Health, a leading global healthcare advisory firm.
MS patients’ overall quality of life is similar across all patient groups, with untreated patients having a higher quality-of-life score than their treated counterparts, especially those treated with non-disease-modifying drugs. While untreated patients have fewer issues with activities of daily living, they claim their health problems have affected their relationships with family and friends to a similar degree as treated patients. Apart from these categories, untreated patients score higher on other dimensions such as rejection, coping, symptoms and psychological well-being.
“MS is a chronic disease that progresses at different rates depending on the patient,” said Rose Lorenzo, director of research at Kantar Health. “While untreated patients have been diagnosed with their condition for an average of 20 years, slightly more than half assess their degree of disability as normal to mild. Therefore, they face fewer problems with rejection and in coping with their disease. However, the data suggest that current treatments for MS still are not meeting patients’ needs, and new treatments need to improve patients’ quality of life and overall outcomes.”
MS-related quality of life was assessed with the Multiple Sclerosis International QoL questionnaire. More than 950 MS patients answered questions in nine domains, and quality of life was measured on a 100-point scale based on responses to these questions.
About Kantar Health Syndicated Patient Studies
The study’s results were drawn from the Multiple Sclerosis Syndicated Patient Study, a nationally representative, self-administered survey. Topics covered include the health status, attitudes, behaviors and patient-reported outcomes among adults diagnosed with MS. Kantar Health conducts syndicated studies across several therapeutic areas in the U.S.
Source: PR Web © Copyright 1997-2013, Vocus PRW Holdings, LLC (08/08/13)
Background: Spasticity is a common symptom in multiple sclerosis (MS) that increases the burden of disease. This study investigated the relationship between the degree of spasticity and patients' health-related quality of life (QoL).
Methods: Epidemiological, multicentre, cross-sectional study in patients with MS spasticity. The SF-12 questionnaire was used to assess QoL. The modified Ashworth scale and a 0-10 Numerical Rating Scale (NRS) were used to assess spasticity severity.
Results: Data were analysed for 409 MS patients with spasticity from 53 neurology clinics in Spain. Mean age was 46.4 (±11.0) years; 62.4% were women. Most patients had relapsing-remitting MS (42.1%) or secondary progressive MS (43.9%). Mean time since MS diagnosis was 12.5 (±7.4) years and mean time since first spasticity symptoms was 6.1 (±4.8) years. A total of 71.3% of patients were being treated pharmacologically for spasticity. Moderate to severe spasticity was measured in 59.2% of patients according to the modified Ashworth scale and in 83.4% according to the NRS. Mean scores for the 0-100 Physical Component Summary and Mental Component Summary subscales of the SF-12 questionnaire were 31.0 (±9.3) and 45.4 (±12.0), respectively. Scores on the SF-12 correlated significantly with scores on both spasticity scales ( p ≤ 0.002) but the correlation was stronger with the NRS across all domains.
Conclusions: The results confirm an association between spasticity severity and QoL in patients with MS. The correlation between 0-10 NRS scores and QoL was stronger than that between modified Ashworth scale scores and QoL.
Arroyo R, Massana M, Vila C.
Department of Neurology, Hospital Clínico San Carlos, Madrid, Spain.
Source: Int J Neurosci. 2013 Jul 15. [Epub ahead of print] & Pubmed PMID: 23819835 (01/08/13)
Responsiveness, defined as the ability to detect a meaningful change, is a core psychometric property of an instrument measuring quality of life (QoL) rarely reported in multiple sclerosis (MS) studies.
Objective: To assess the responsiveness of the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire to change in disability over 24 months, defined by change in the Expanded Disability Status Scale (EDSS) score.
Methods: Patients with MS were enrolled into a multicenter, longitudinal observational study. QoL was assessed using both the MusiQoL and the 36-Item Short-Form (SF-36) instruments at baseline and every 6 months thereafter up to month 24; neurological assessments, including EDSS score, were performed at each evaluation.
Results: The 24-month EDSS was available for 524 patients.
In the 107 worsened patients, two specific dimensions of MusiQoL, the sentimental and sexual life and the relationships with health care system dimensions, and 'physical'scores of SF-36 showed responsiveness.
Conclusions: Whereas specific dimensions of MusiQoL identified EDSS changes, the MusiQoL index did not detect disability changes in worsened MS patients in a 24-month observational study. Future responsiveness validation studies should include longer follow-up and more representative samples.
Author: Karine BaumstarckHelmut ButzkuevenOscar FernÃ¡ndezPeter FlacheneckerSergio StecchiEgemen IdimanJean PelletierMohamed BoucekinePascal Auquier
Credits/Source: Health and Quality of Life Outcomes 2013, 11:127
Source: 7thSpace Interactive © 2013 7thSpace Interactive (30/07/13)
Multiple 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.
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(09/09/12)
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. (07/08/12)
A 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)