Quality of life
In a review published in the European Journal of Neurology, A. P. Lysandropoulos from the University of Brussels and E. Havrdova, from the University of Prague described some ‘hidden’ issues that influence the quality of life (QoL) in patients with MS.
In the review, researchers discussed the limitations concerning the measurement of QoL and provide early evidence for the benefits of specific psychological support on patients’ QoL.
QoL in patients with MS is influenced by factors beyond pathophysiology and disease progression, and is frequently at odds with objective measures of condition. MS patients may be well treated and free of symptoms but still have poor QoL due to patient-centred factors such as depression, inability to work and relationship issues.
In the review, “Hidden factors influencing quality of life in patients with multiple sclerosis”, the researchers firstly mentioned that amongst the first critical parameters influencing QoL in MS patients is the MS ‘label’. The mere thought of MS can strike fear in people even in the absence of any knowledge about the disease. At the time of an MS diagnosis, many patients immediately visualise themselves in a wheelchair, and this pessimistic perception of the condition determines the way in which a patient analyses his or her symptoms by amplifying them.
Cognitive impairment is another factor that is increasingly being recognised as part of life with MS, existing alongside physical symptoms and limitations. Since patients become less effective professionally and socially, impaired cognition can lead to a vicious cycle of frustration with negative impact on QoL. Cognitive issues can develop early in the course of MS, particularly with respect to processing speed and handling of complex information.
Sexual dysfunction is also frequent in MS patients, and it is reported to occur in up to three-quarters of women and up to 90% of men. Sexual dysfunction has been shown to have a greater detrimental effect on mental health aspects of health-related QoL in MS patients than the severity of physical disability.
Regarding MS as a family problem, a diagnosis of MS is traumatic not only for the patient but also for the patient’s family. Most MS patients are diagnosed at a relatively young age and it is only natural for parents to be concerned about their child. Life plans such as work, relationships and family planning may be adversely affected by MS, and feelings of anger, denial and fear are not limited to the patient but are also experienced by the family.
A real limitation regarding the measurement of QoL in MS patients is the lack of validated instruments. Traditional approaches used to measure QoL in MS tend to lack sensitivity to change, and the current repertoire of tools does not allow for easy assessment of all aspects of the disease, including the many hidden issues that influence QoL.
Physical and cognitive difficulties have a negative psychological impact on MS patients and, in turn, on their QoL. Psychological interventions for MS are necessary to address all the factors that influence QoL in patients. The beneficial effects of psychological support in MS patients may go beyond improved patient-centered outcomes and impact directly on disease activity.
The authors believe that, as with other chronic diseases, it can be argued that QoL is a more relevant outcome in MS patients than traditional measurements such as disability or neurological impairment. However, much work needs to be done before QoL assumes its rightful position as the primary outcome measure in clinical trials and clinical practice. According to the authors, elements that influence QoL in MS patients need to be better defined and there is a need to be clarified which of the many QoL instruments should be used and for what purposes. Moreover, the authors mentioned that more evidence is required of the benefits of psychological support strategies on both disease progression and QoL in MS patients.
The authors concluded that future studies are expected to better define the most suitable means of assessing patient-centered outcomes in MS, and identify the most appropriate management strategies for individual patients.
Source: Multiple Sclerosis News Today © BioNews Services 2015 (22/09/15)
Patients with relapsing-remitting multiple sclerosis (RRMS) often have deficits in two neuropsychological functions, autobiographical memory (AM) and episodic future thinking (EFT), which impact quality of life.
In a new study published in Restorative Neurology and Neuroscience, researchers report that training RRMS patients in mental visual imagery (MVI) can improve AM/EFT functioning.
AM facilitates the ability to remember personal detailed events within a specific location and timeframe. EFT enables people to imagine future personal detailed events as they might happen. When AM or EFT is impaired, patients can have difficulty participating in daily life.
"Several functions have been attributed to AM, such as its role in the construction of sense of self temporally extended, the development of new social relationships and the nurturing of existing ones, and a directive function where the past serves as a basis to guide present and future behaviours," explained Liliann Manning, PhD, Cognitive Neuropsychology and Physiopathology of Schizophrenia (INSERM UMR 1114), University of Strasbourg (France). "Taken together, AM constitutes a central process in any individual's life." EFT contributes to coping skills, goal achievement, implementation of intentions, and to a sense of personal continuity over time.
The MVI program to improve patients' AM/EFT is based on the ability to mentally construct scenes and pay close attention to details in the mind's eye. Participating patients underwent six two-hour MVI sessions, once or twice per week (depending on the patient's availability). The program comprised four steps, with mental visualisation exercises of increasing difficulty, during which the attending neuropsychologist provided continuous guidance (as much as necessary) to the patient, probing to recall general aspects to more detailed ones, adopting a "funnel-approach," and learning to work in a sequential manner.
Fourty RRMS patients participated in this study, all of whom were receiving regular drug therapy and were being evaluated for disease progression through clinical examination. All participants were also evaluated for brain abnormalities using MRI to confirm that significant signs of atrophy were present.
After establishing a baseline for each patient, AM and EFT were assessed using an adapted version of the Autobiographical Interview. Patients were divided into three groups who received MVI (the experimental group), a sham verbal treatment (verbal control group), and no treatment (stability group). The use of the control and stability groups was intended to rule out nursing and test learning effects.
Patient commentaries about the MVI program collected during this investigation noted a more general feeling of self-confidence in life, with higher levels of control and vitality.
According to Dr. Manning, "In summary, the major finding of this study is that AM and EFT impairment could be efficiently improved by means of a facilitation program and that the use of an MVI strategy seemed easily integrated and resulted in significant benefits in their daily life functioning. More generally, we hope that this study and its positive outcomes could encourage future investigations in different clinical settings."
Source: EurekaAlert! Copyright © 2015 by the American Association for the Advancement of Science (AAAS)(26/08/15)
Researchers from Case Western Reserve University's Frances Payne Bolton School of Nursing have been studying what makes MS patients happy — and their work has now been published in the Journal of Rehabilitation Medicine.
They asked 335 people who had been living with MS for about 15 years to rank the activities most important to them. These activities were reported to be “getting out and about, spending time with family and friends, managing bills and expenses, and participating in clubs and civic and political events.”
By finding out what people with MS enjoy doing, or who they enjoy visiting, researchers could narrow down what was keeping them from engaging in their favourite activities, as well as with others. The results revealed that “struggling with impairments, like MS fatigue and cognitive and walking problems… inadequate social support and transportation issues… impede a person’s confidence.” Lack of confidence also influenced how well people with MS manage their symptoms.
Put another way: physical impairments, lacking support, and environmental factors act as barriers between those with MS and health and happiness. Researchers explained that not being able to overcome these barriers could possibly lead to secondary symptoms, “like depression, deconditioning from lack of exercise, and poor nutrition or eating choices that may result in obesity or diabetes.”
The study suggests it would be beneficial to people if treatments also focus on their mental health.
Matthew Plow, the study’s lead author, said in a press release that it would be worthwhile to test an intervention designed to boost people's confidence levels, which may equip them to make any changes and learn new skills in order to engage more with their community.
Primary Source: Plow M, et al. Correlates of Participation in Meaningful Activities Among People with Multiple Sclerosis. Journal of Rehabilitation Medicine, July 2015
Source: Medical Daily © 2015 Medical Daily (27/07/15)
A study published in the journal PLoS One revealed an excess mortality rate among French patients with multiple sclerosis (MS) that experience the disease for more than 20 years. The study was conducted by researchers at several institutes and hospitals in France, and is entitled “Excess Mortality in Patients with Multiple Sclerosis Starts at 20 Years from Clinical Onset: Data from a Large-Scale French Observational Study.”
Researchers conducted a large-scale, observational, multicenter study (SURVIMUS) to analyse the specific mortality rate associated with MS in France. In total, 27,603 MS patients (mean age at onset of 33 years) were assessed in terms of life expectancy, mortality rates, causes of death, and prognostic factors in comparison to the French general population. All patients analysed had clinical onset of the disease at least one year prior to the study.
The team found that 1,569 (5.7 per cent) patients succumbed during the follow-up period of the study (mean 15.2 years), with half of the mortalities being related to MS. The mortality rate was found to be significantly higher among men, in patients with progressive MS, and patients with later clinical onset. Researchers also observed that the excess mortality rates were moderate in comparison to the general population, although after 20 years of disease, excess mortality increased significantly among MS patients.
The research team concluded that in this French cohort, MS patients have a moderate decrease in life expectancy by approximately seven years in comparison to the general population. In addition, the mortality rate was found to be strongly correlated to the patient’s disability and disease duration, with patients living with the disease for more than 20 years having an excess mortality rate. The team emphasised that an early intervention is required to slow disability progression and offer an extended life expectancy in MS patients.
While insights such as these may seem discouraging to the MS patient population, the findings from the SURVIMUS study are in fact helpful to researchers in focusing research efforts to develop next-generation MS therapies. Given that the study reveals that excess mortality occurs 20 years after disease onset, researchers underscore the need to slow down the progression of the disease. With novel experimental therapies focusing on neuroprotection and myelin regeneration, there are promising therapeutic approaches moving through the MS drug development pipeline that will further decrease MS progression, which in turn may lower mortality rates caused by the disease.
Source: Multiple Sclerosis News Today © BioNews Services 2015 (21/07/15)
Tags: MS, multiple sclerosis, France, neurodegenerative disorder, central nervous system, death, research
A new study has put forward the suggestion of a relationship between mood disorders, suicidal thoughts, substance abuse and problem drinking in people with MS.
Researchers Susan Quesnel and Anthony Feinstein of the Department of Psychiatry, University of Toronto and Sunnybrook and Women’s College Health Science Centre in Ontario, Canada, sought to find out more about problem drinking, depression and suicide in people with MS.
The pair studied drinking patterns in 140 multiple sclerosis patients. The researchers sought to determine whether study participants had a lifetime history of psychiatric diagnoses using a standard assessment called the Structured Clinical Interview for DSM-IV disorders (SCID-IV). The DSM-IV refers to the Diagnostic and Statistical Manual of Mental Disorders used by clinicians and psychiatrists to diagnose psychiatric illness.
The research revealed that one in every six MS patients drinks to excess over the course of their lifetime. Those people with a history of problem drinking also had a higher lifetime prevalence of anxiety, but not mood disorders such as depression. In addition, people with a drinking problem also were more likely to have had suicidal thoughts over the course of their lifespan, as well as other substance abuse problems and a family history of mental illness. The researchers found that all of these associations were statistically significant.
In their report, the researchers said: “Clinicians should be aware of the possibility of problem drinking in MS patients, and how this may complicate the course of their disease. Clues to problem drinking in MS patients are the presence of a positive family history of mental illness and prominent anxiety.”
The researchers said comprehensive care of MS should ideally include monitoring for other commonly associated problems, such as depression, suicidal thoughts, drinking problems and anxiety. Understanding risk factors for the occurrence of these problems in MS can help patients and their families alike.
Source: Multiple Sclerosis News Today © BioNews Services 2015 (12/05/15)
Multiple sclerosis patients who consumed larger amounts of alcohol had lower rates of disability per the Expanded Disability Status Score (EDSS) and Multiple Sclerosis Severity Score (MSSS), a new study indicates.
Consumption of beer also affected EDSS scores positively; however consumption of wine had no association with EDSS score, according to Camilio Diaz-Cruz, MD, of Brigham and Women's Hospital in Boston, who reported the findings at the American Academy of Neurology 2015 Annual Meeting.
Camilio and colleagues measured alcohol/wine consumption in servings per week for 908 patients enrolled in the Comprehensive Longitudinal Investigation of Multiple Sclerosis (CLIMB) study. Drinking habits were also assessed, and influence of alcohol or wine consumption on clinical outcomes was assessed using regression models for relapse rate in the past year, and concurrent EDSS and MSSS outcomes. Associations with and changes in Symbol Digit Modality Tests (SDMT) were also assessed in a subset of patients.
There were 56 nondrinkers in the cohort; 98 of who preferred spirits, 249 preferred beer, 283 preferred red wine, and 222 favoured white wine. Median alcohol intake was 1.1 servings per week.
Those who had higher alcohol intake were significantly associated with lower EDSS and MSSS. Both red and white wine had a non-significant negative association with both EDSS and MSSS, and there was no significant association between alcohol or wine consumption and relapse rate in the past year, change in EDSS or MSSS over one year, current SDMT score, and change in SDMT score in the last year. Notably, beer drinkers tended to have lower EDSS, however the relationship was weaker compared to that of “hard liquor”.
Although further data analyses are required to better understand the potential cause-effect relationship and underlying mechanism, the findings are complimentary to several previous but unconfirmed studies that suggest alcohol may be neuroprotective in the risk of developing multiple sclerosis.
Source: Neurology Advisor Copyright © 2015 Haymarket Media, Inc (24/4/15)
Mindfulness-based cognitive therapy may be as good as pills at stopping people relapsing after recovering from major bouts of depression, according to a new study.
Mindfulness-based cognitive therapy (MBCT) was developed from mindfulness techniques, which encourage individuals to pay more attention to the present moment, combined with cognitive behaviour therapy (CBT), specifically to try to help people who have recurring depression.
It teaches people to recognise that negative thoughts and feelings will return, but that they can disengage from them.
The trial, published in The Lancet involved a group of 424 adults from GP practices in the south-west of England, who were willing to try either the pills or the therapy. Half were randomly allotted to each. Those assigned to mindfulness had eight group sessions of more than two hours plus daily home practice and the option of four follow-up sessions over a year. The course involved mindfulness training, group discussion and cognitive behaviour exercises. The patients gradually came off their medication. Those assigned to the other group stayed on the tablets for two years.
The relapse rates in the two groups were similar, with 44% in the mindfulness group and 47% for those on the drugs. In each group there were five adverse events, including two deaths.
The researchers had thought the study might show that therapy was more effective than pills, based on their earlier work. Lead author Willem Kuyken, a professor of clinical psychology at the University of Oxford, said: “That was our hypothesis. It was based on our pilot study in 2008. There was a suggestion that MBCT might do better than medication. The reality is that it was not superior to medication.”
However, they established that mindfulness-based therapy is equally as good as drugs, which could offer a new option for those who do not want to be on medication for years. Co-author Prof Richard Byng, from the Plymouth University Peninsula Schools of Medicine and Dentistry, said: “Currently, maintenance antidepressant medication is the key treatment for preventing relapse, reducing the likelihood of relapse or recurrence by up to two-thirds when taken correctly.
“However, there are many people who, for a number of different reasons, are unable to keep on a course of medication for depression. Moreover, many people do not wish to remain on medication for indefinite periods, or cannot tolerate its side-effects.”
Nigel Reed, from Sidmouth, Devon, who took part in the trial, said: “Mindfulness gives me a set of skills which I use to keep well in the long term. Rather than relying on the continuing use of antidepressants, mindfulness puts me in charge, allowing me to take control of my own future, to spot when I am at risk and to make the changes I need to stay well.”
The study also showed that the therapy might work better than pills for those who have some of the most troubled histories and are at the highest risk of relapse. It was found to have protected people with increased risk because of a background of childhood abuse. The paper said: “Perhaps MBCT confers resilience in this group at highest risk because patients learn skills that address some of the underlying mechanisms of relapse or recurrence.”
Kuyken said he expected Nice to look at the study when it convenes shortly to revise its guidelines on recurrent depression.
Source: The Guardian © 2015 Guardian News and Media Limited (21/04/15)
A group of researchers have been investigating the theory that high levels of uric acid, whch may have protective effects on neurons and are present in gout patients, could mean gout resulting in a reduced risk of developing neurological disease, reports Multiple Sclerosis News Today.
“This study investigated the epidemiological evidence for a protective role of high serum concentration of uric acid, for which we used gout as a proxy, in the aetiology of multiple sclerosis, Parkinson’s disease, or motor neuron disease,” wrote Dr. Pakpoor, who works alongside Dr. Michael J. Goldacre at the Unit of Health-Care Epidemiology in the University of Oxford. The article, “,” was published in the journal BMC Neurology.
Dr. Julia Pakpoor’s study, Clinical Associations Between Gout And Multiple Sclerosis, Parkinson’s Disease And Motor Neuron Disease: Record-linkage Studies, analysed patient records for hospital admissions and deaths in England between 1999 and 2012. Of approximately nine million hospital admissions, 214,653 were related to gout, 82,220 related to multiple sclerosis, 217,179 related to Parkinson’s disease, and 25,185 related to motor neuron disease.
When researchers analysed the long-term data from the study, patients with gout were not found to be less likely to develop multiple sclerosis. Although the odds ratios revealed a modest correlation between gout and subsequent multiple sclerosis, that observation was negated when the researchers only analysed neurological disease diagnosed within five years of a gout diagnosis.
On the other hand, patients with multiple sclerosis were less likely to experience gout, the study found.
Strengths of the study included a large sample size and a national representation of the population. However, since the study was not conducted in a cohort of patients, the researchers are limited in knowing if hospitalisations were “first ever” diagnoses. Additionally, gout is only a representation of increased serum uric acid, meaning the association between uric acid and neurological disease may be underestimated.
To remediate this limitation, the authors suggest the possibility of conducting a follow-up study of multiple sclerosis patients to identify the presence of gout or serum levels of uric acid over time.
Source: Multiple Sclerosis News Today © BioNews Services 2015 (07/04/15)
Emotional health is important when battling any illness, writes Multiple Sclerosis News Today, but despite this sometimes the benefits of emotional health are overlooked by healthcare providers. Excessive stress can lead to anxiety and depression, which increases hormones such as adrenalin and glucocorticoids that shut down the immune system. Glucocorticoids have well-known negative effects on the nervous system.
Two research teams, including one supported by America’s National MS Society, are now studying ways to increase emotional wellness in people with MS.
Kimberly Beckwith McGuire, PhD, and her co-workers at the Kessler Institute for Rehabilitation in West Orange, NJ, have published a recent report on their evaluation of a psychoeducational MS wellness program in the International Journal of MS Care. The scientists studied forty-three people with MS who participated in a 10-week wellness program. The program involved 90-minute group sessions aimed at increasing awareness of social, intellectual, emotional, and spiritual factors. Eleven people with MS who were not in the program served as controls. The subjects filled out surveys to assess depression, anxiety, stress, cognition, pain, social support, and fatigue.
The group participating in the wellness program experienced statistically significant reductions in depression, anxiety, overall mental health, perceived stress, and pain compared to the controls. The program could serve as a model for the supplemental treatment of people with MS in general.
A second study published in BioMedCentral Psychiatry by Dr. Keryn L. Taylor and collaborators examined 2,459 people with MS who filled out an online survey capturing information on demographics, diagnostic history, level of disability, conditions occurring alongside MS, fatigue, depression and lifestyle and health behaviours.
About one-fifth of people in this study had depression. Within that group, about 93 per cent had clinically significant fatigue. Poor diet seemed to increase the risk for depression. In fact, dietary factors also decreased the risk for depression, including taking omega-3 fatty acids (particularly flaxseed oil) supplements and vitamin D supplements, eating fish regularly, meditating, and consuming moderate alcohol.
The results of these two studies are promising and underscore the importance of not just managing the symptoms of MS, but also paying attention to emotional health and lifestyle factors.
Further research on lifestyle factors and their impact on MS is a priority of the National MS society, so additional studies of this nature are likely in the works. Hopefully this research will have a positive impact on improving the quality of life of those with the disease.
Source: Multiple Sclerosis News Today © BioNews-tx.com 2015 (16/03/15)
Multiple Sclerosis (MS) patients are less able to regulate their emotions and have a poorer quality of life than people who don't have the disease, according to research carried out at the University of Aberdeen.
MS currently affects around 100,000 people in the UK and Scotland has one of the highest incidences of the disease in the world. While usually considered to be primarily a disease that affects movement, there are high instances of emotion disorders such as depression reported in people with MS.
Prof Louise Phillips, Chair in Psychology at the University of Aberdeen said, "We are interested in how MS contributes to difficulties in understanding and controlling your own emotions - known as emotion regulation. We already know that there are high levels of depression in MS and that MS affects brain networks that are potentially involved in emotion regulation. This study showed that people with MS had poorer emotion regulation ability than those who did not have MS. This is new information and helps us to understand the difficulties that people with MS face in their everyday life. Importantly, we found that those with MS and poor emotion regulation also scored lower on quality of life and social interaction measures. This is evidence of how emotion regulation difficulties in MS can impact on real-life situations."
This study funded by Tenovus Scotland and published recently in the Journal of Clinical and Experimental Neuropsychology involved asking people with MS to complete questionnaires about their ability to cope with their own emotions, how they generally feel and how often they socialise.
Currently, the symptoms of MS are managed by drug treatments that tackle the motor difficulties associated with the disease. This new study, however, paves the way for future interventions to include ways to improve emotion regulation.
Prof Phillips said, "The findings of this study suggest that additional treatments that focus on emotion difficulties such as cognitive behavioural therapy should be considered as part of the MS management programme. In doing so, this may help improve the quality of life of some people with MS. It is important to investigate emotion regulation and quality of life in order to understand the challenges that those with MS face when in everyday social situations. As well as having social implications, like increases in conflict, poor emotion regulation can impact more broadly on health and has been found to be associated with some heart problems."
Source: MedicalXpress © Medical Xpress 2011-2014, Science X network (13/01/15)
Modifiable lifestyle factors contribute to depression in multiple sclerosis (MS) patients, according to a study published in BMC Psychiatry.
Researchers from St. Vincent's Hospital Melbourne in Victoria, Australia examined nearly 2,500 MS patients in order to understand the association between lifestyle risk factors, medication, and depression risk through the analysis of self reported data.
The researchers collected data about the participants' sociodemographics, diagnostic history, level of disability, comorbidities, fatigue, depression, body mass index (BMI), and an assortment of lifestyle and health behaviors. Patients were mainly female (82.4 percent) and middle aged (median age 45 years) and most patients (61.3 percent) had relapsing remitting MS. Most participants health either a bachelor (36.5 percent) or post graduate degrees (23.5 percent) and worked either full time (32.8 percent) or part time (21.3 percent). Diagnosis occurred at a median age of 37 years and half (45.2 percent) had been recently diagnosed within the last 5 years. Mild disability was reported in 54.8 percent of the patients.
About a fifth of the patients (19.3 percent, 429 patients) screened positive for depression and 21.8 percent were taking prescription medication for depression. However, 10 percent of those taking medication for depression stated they did not have depression. Of patients who screened positive for depression, 92.9 percent also screened for clinically significant fatigue. The patients reported the following symptoms:
- Little interest of pleasure in doing things: 18.9 percent
- Feeling down, depressed, or hopeless more than half the days or every day: 14.5 percent
- Depression as a comorbidity: 30.9 percent
- Of those who cited depression as a comorbidity, 70.6 percent reported receiving treatment for the condition
- Depression limits their activities: 39.1 percent
The following lifestyle factors were associated with low risks of screening positive for depression:
- Never smoking, but risk increased with former smokers and again in current smokers.
- Moderate alcohol intake, but risk increased in patients with low alcohol intake
- Exercise saw a dose response effect and was linked to lower risk of screening for depression
- Taking vitamin D was associated with low odds
- Using both omega 3 or fish oil supplements showed low odds, but flaxseed oil demonstrated the lowest odds
- Mediation, but not isolation, was associated with lower odds
- Obese patients screened positive more often than patients with normal BMI
- Increasingly poor diet and taking interferons also increased odds for positive screenings of depression
“This study demonstrates a strong clinically and statistically significant association between modifiable lifestyle factors and risk of depression,” the authors concluded. “Diet, smoking, exercise, omega 3 supplementation - particularly flaxseed oil - fish consumption, social support, vitamin D supplementation, BMI, alcohol intake, meditation and choice of medication are important modifiable factors in depression risk for people with MS. It is important for clinicians and people with MS to be aware of the wide range of modifiable lifestyle factors that may reduce depression risk as part of a comprehensive secondary and tertiary preventive medical approach to managing MS.”
Source: HCPLive © HCPLive 2015 (08/01/15)
Estimating typical Multiple Sclerosis disability progression speed from clinical observations(20/10/14)
Murray G. Brown, Mark Asbridge, Vern Hicks, Sarah Kirby, Thomas J. Murray, Pantelis Andreou, Dong Lin
Multiple sclerosis (MS) is a chronic disease of the central nervous system. Estimates of MS natural history (NH) disability progression speed from clinical observations vary worldwide. This may reflect, in part, variance in censoring-bias) (missing observations) and assumptions about when irreversible disability progression events occurred. We test whether estimates of progression speed which assume midpoint survival time at irreversible disability endpoints are significantly faster than estimates which assume maximum survival time, and are more stable across study groups and time periods.
Our Nova Scotia NH study population includes 2,240 definite relapsing-onset multiple sclerosis (R-MS) natural history patients with 18,078 Expanded Disability Status Scale (EDSS) clinical observations in study period 1979–2010. Progression speed is measured by rate-of-change in range EDSS 0–6 and by survival time at irreversible endpoints EDSS 1–9. Midpoint censoring-bias-reduction methods are applied to clinical observations.
Typical EDSS increase per year in range EDSS 0–6, assuming midpoint survival time, is estimated to be 0.168 for all R-MS, 0.204 for eventually-DMD-treated patients and 0.155 for never-DMD-treated patients. Estimates assuming midpoint rather than maximum survival time are significantly faster: 16% faster for all R-MS natural history patients, 6% faster for eventually-DMD-treated patients, and 21% faster for never-DMD-treated patients. The variability of estimates across study groups and time periods decreased when midpoint survival time was assumed.
Estimates of typical disease progression speed from 1979–2010 Nova Scotia clinical observations are sensitive to censoring-bias and to analysts’ survival time assumptions. Censoring-bias-adjusted estimates of typical natural history disability progression speed in relapsing-onset multiple sclerosis patients are significantly faster, and less variable within and across study groups and time periods, than unadjusted estimates, and are, arguably, more relevant for various stakeholders. The application of censoring-bias-reduction methods to other multiple sclerosis clinical databases may reduce variability in estimates of disability progression speed worldwide.
Source: PLOS © 2014 Brown et al (20/10/14)
Balance impairment in multiple sclerosis (MS) involves constraints across multiple systems and consequently necessitates multimodal treatment, according to a study published in the September issue of the Journal of Clinical Outcomes Management.
Susan L. Kasser, PhD, and Jesse V. Jacobs, PhD, from the University of Vermont in Burlington, conducted a systematic literature review to examine the mechanisms and treatment options associated with balance impairment in patients with MS.
The researchers found that balance deficits are common in MS and result from constraints across multiple systems of postural control. Increased fall risk, decreased physical activity, additional comorbidities, and reduced quality of life were found to result from poor balance. For individuals with MS who experience balance and mobility problems, a variety of exercise options are available. Targeted therapies such as vestibular rehabilitation and weighted torso training as well as general exercise and balance training prescriptions are potential physical interventions.
"Given that postural impairments result from a diverse set of deficits in different underlying control systems, therapeutic intervention should be multimodal," the authors write. "Exercise prescription should address all affected contexts of postural control, including sensory and motor strategy training during postural transitions as well as induced postural perturbations, strength development, and gait activity."
• Objective: To provide insight into the mechanisms and treatment options associated with balance impairments in individuals with multiple sclerosis (MS).
• Methods: Systematic reviews, randomized controlled trials, and noncontrolled studies were examined to collect current data regarding treatment options aimed at improving balance in MS.
• Results: Balance deficits are common in individuals with MS and result from a diverse set of constraints across multiple systems of postural control. Poor balance often leads to increased fall risk, reduced physical activity, added comorbidities, and decreased quality of life. A variety of exercise options are available for individuals with MS who experience balance and mobility problems. Physical interventions include targeted therapies, such as vestibular rehabilitation and weighted torso training, as well as more general exercise and balance training prescriptions.
• Conclusion: The evidence, albeit preliminary, suggests that therapeutic intervention aimed at ameliorating balance deficits associated with MS be multimodal. Exercise prescriptions should include sensory and motor strategy training, strength development, as well as functional gait activities. Further evidence-based research is needed to improve the management of balance deficits in those with MS and to identify the impact of improved balance on activity participation and quality of life.
Sources: MPR © 2014 Haymarket Media, Inc & JCOM Copyright (c) 2014, Turner White Communications, Inc (29/09/14)
Postcode lottery for Sativex(10/09/14)
A multiple sclerosis patient has complained of a "postcode lottery" in the funding of a drug to help with his symptoms. Sativex is not considered cost-effective and is not routinely funded by health bodies in England. Philip Grace, 58, from Great Tey in Essex, has been paying privately to get the drug, which cannot be prescribed by his GP. He was told it might be funded on the NHS if he lived elsewhere.
"My doctor used the term 'postcode lottery' to describe my situation. I know other people in Essex who take it under NHS prescription," he said. Diagnosed with MS 13 years ago, Mr Grace said the condition has had a huge impact on his movement. He said: "Before I started taking Sativex, walking felt like trying to walk through water. It was like my body was fighting itself. "I would also have really bad spasms during the night, which would mean I couldn't sleep. Nowadays, I still don't have much control over my legs, but my strength is coming back. Sativex helps with muscle spasms and is used by patients when other treatments are ineffective. It was the first cannabis-based medicine to be licensed in the UK.
In August, the NHS in Wales announced it would fund the medicine, following an appraisal by the All Wales Medicines Strategy Group. But in draft guidance published by Nice (National Institute for Health and Care Excellence), the drug was not considered to "represent cost-effectiveness". The Mid Essex Clinical Commissioning Group, which funds health services in Mr Grace's area, said it did not routinely fund Sativex, but patients could be referred for "exceptional funding" by their GPs. Mr Grace said his referral was made in July, but he is yet to receive a reply.
Source: BBC News © British Broadcasting Corporation 2014 (09/09/14)
New International Survey Finds MS Patients and Neurologists View Communication Positively, Yet Struggle to Discuss Key MS Symptoms.
– Neurologists Underestimate Patient Discomfort with Discussing More Typical Symptoms
– Patients Most Uncomfortable Engaging in Candid Dialogue about More Private Symptoms
– Patients and Physicians Not Always Aligned
Findings from an international survey show differences in the perceptions of people living with multiple sclerosis (MS) and neurologists when discussing MS symptoms, including those that are personal and sensitive. While the results generally suggest a positive assessment of current practice in MS, important gaps were identified that could potentially impact disease management and patient quality of life. These findings will be presented this week at the Sixth Triennial Joint Meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis and the European Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS-ECTRIMS) in Boston.
The survey, commissioned by Biogen Idec and conducted online by Harris Poll, was developed in partnership with the State of MS Consortium, an international steering committee of treating neurologists from five countries and representatives from patient advocacy groups. The survey involved MS patients and neurologists who treat the disease in Germany, Italy, Spain, the United Kingdom (UK) and United States (U.S.) and aimed to understand the current experiences of those living with and treating the disease, including communication between MS patients and their physicians.
“There are a variety of symptoms a person living with MS can experience, and as physicians we need to constantly evaluate the most effective strategies to address all of our patients’ needs,” said Mar Tintore, M.D., Ph.D., senior consultant neurologist, Neurology-Neuroimmunology Department, MS Centre of Catalonia, Hospital Vall d’Hebron, Barcelona, Spain. “This survey illustrates that while there is a high degree of satisfaction with overall physician-patient communication, disconnects between patients and physicians mean some symptoms could be under-managed.”
Despite Open Communication, Discomfort Remains in Discussing Typical Symptoms, Including Those That Are Private and Sensitive
More than eight in ten patients (83 percent) say they feel comfortable talking about their MS with their neurologists, noting their neurologist provides them with helpful information (81 percent). Moreover, 85 percent of patients characterise their neurologist as honest in setting their expectations for therapy success. Similarly, nearly all neurologists (96 percent) feel they have an open dialogue in which their patients can ask any question they want, and 90 percent indicate they have a good understanding of all aspects of their patients’ disease. Yet a divide exists specifically around communication about certain MS symptoms.
Neurologists tend to underestimate their patients’ discomfort talking about MS symptoms often associated with the disease, while overestimating patient discomfort discussing other, more private symptoms. Nearly one in five patients who experience MS symptoms report being uncomfortable speaking with their neurologist about their difficulty walking (19 percent), tremors (19 percent) and muscle spasms (18 percent), but only two to three percent of neurologists identify these symptoms as uncomfortable topics for their patients to discuss with them. Conversely, neurologists are in alignment with patients when identifying the most difficult topics for patients to discuss, and tend to expect a higher level of discomfort than what is expressed by patients. The sensitive symptoms that emerged as the most uncomfortable for patients to discuss were sexual difficulties (54 percent of patients, with 87 percent of neurologists perceiving this as being uncomfortable for patients) bladder or bowel problems (28 percent; 54 percent), mood swings (26 percent; 37 percent) and cognitive/memory issues (21 percent; 37 percent).
What can Hinder Communication? Not surprisingly, time constraints are cited as the greatest barrier by neurologists (47 percent) when it comes to patient communication. For patients, however, not wanting to be perceived as being “difficult” was cited as the barrier that most interfered with communication with their physicians (24 percent), followed by time constraints (21 percent). “The discomfort reported by both people living with MS and treating physicians suggests that important conversations about all of the symptoms associated with MS may not be happening,” said Maggie Alexander, chief executive, European Multiple Sclerosis Platform (EMSP). “People with MS and their physicians should be empowered and equipped to discuss all aspects of the disease. This open and honest dialogue is critical to achieving improved quality of life and better long-term outcomes.”
Information is Accessible, but More is Needed
While the survey shows communication gaps between patients and neurologists exist, findings also demonstrate respondents are seeking information about the disease:
Sixty-three percent of physicians recommend materials available at their office to their patients, while only 19 percent of patients cite these materials as most helpful;
Seventy-two percent of patients find online and social media resources most helpful for finding information about MS; these resources are also recommended by 73 percent of physicians to their patients;
Many neurologists indicate a desire for additional resources to provide to their MS patients, including information on maintaining cognitive function (49 percent), managing the emotional challenges of having MS (45 percent) and being sexually active (43 percent).
“At Biogen Idec, we believe that successful MS treatment extends beyond medication. Our goal with this survey was to better understand the needs of the patient and the physician, and through that understanding bring a new awareness to the importance of a comprehensive dialogue about MS,” said Gilmore O’Neill, vice president, Multiple Sclerosis Research and Development, Biogen Idec. “Our alliance with the State of MS Consortium will ultimately help us work with the MS community to address these issues and continue to improve care.”
In collaboration with the State of MS Consortium, an in-depth report of these findings and perspectives from the committee members is currently under development, and will be available to the MS community by the end of the year. As part of its ongoing commitment, Biogen Idec continues to evaluate the results of this survey and work with the community to identify new and innovative solutions to improve care for MS patients.
About the Survey
Harris Poll, on behalf of Biogen Idec, surveyed 982 adults diagnosed with multiple sclerosis (“MS patients”) and 900 neurologists who treat MS patients (“neurologists”) within Germany, Italy, Spain, the UK, and the U.S. between March 18 and April 25, 2014. Within the U.S., MS patient responses were weighted for gender, age, region, race/ethnicity, education and income where necessary to align with actual proportions in the U.S. MS patient population; U.S. neurologist results were weighted for gender, region, and years in practice where necessary to align with actual proportions in the U.S. neurologist population. A global post-weight analysis was applied to the total data in order to give each country equal weight.
About the State of MS Consortium
The survey was led by the State of MS Consortium, an international steering committee of treating neurologists and representatives from patient advocacy organizations across five countries: the U.S., UK, Spain, Germany and Italy. The steering committee members, who were involved in the development of the survey, include:
Maggie Alexander, chief executive, European Multiple Sclerosis Platform, representing 39 MS societies from 34 European countries
Martin Duddy, M.D., consultant neurologist, department of Neurology, Royal Victoria Infirmary, Newcastle upon Tyne, UK
David E. Jones, M.D., assistant professor, University of Virginia Health System, Charlottesville, VA, U.S.
Nancy Law, executive vice president, National Multiple Sclerosis Society, U.S.
Mar Tintore, M.D., Ph.D., senior consultant neurologist, Neurology-Neuroimmunology Department, MS Centre of Catalonia, Hospital Vall d’Hebron, Spain
Antonio Uccelli, M.D., associate professor of Neurology and head of MS Clinic and Neuroimmunology Unit, University of Genoa, Italy
Robert Weissert, M.D., Ph.D., senior physician and researcher, university professor of Clinical Neurobiology, University of Regensburg, Germany
Sibyl Wray, M.D., director, Hope Neurology MS Center, Knoxville, Tenn., U.S.
Source: Fort Mill Times © Fort Mill Times 2014 (10/09/14)
While multiple sclerosis is most typically associated with progressively declining physical ability, multiple sclerosis patients are often times affected by a number of physical and mental health comorbidities in addition to their worsening physical ability. This observation was highlighted by a group of researchers in Scotland led by Drs. Robert J. Simpson and Stewart W. Mercer of the University of Glasgow.
To establish the finding that “Physical and Mental Health Comorbidity is Common in People with Multiple Sclerosis,” the team analyzed data supplied by a nationally representative Scottish Primary Care dataset from the Primary Care Clinical Informatics Unit. Over three thousand multiple sclerosis patients and over one million controls over the age of 25 were evaluated for 39 different comorbidities. Eight comorbidities were related to mental health, and 31 were related to physical health. Age, gender, and socioeconomic status were also analyzed. Findings were published in the journal BMC Neurology.
As is the case for multiple sclerosis patients living in countries such as the United States, Canada, and Taiwan, multiple sclerosis patients living in Scotland seem to have higher rates of comorbidities. The odds of having at least one comorbidity were more than two times as great for multiple sclerosis patients than for controls. The odds ratios for two, three, or four or more, while not as great, were also significant: 1.49, 1.86, and 1.61, respectively. Most commonly, patients were afflicted with neurological and gastrointestinal conditions.
In terms of purely mental health comorbidities such as anxiety and depression, multiple sclerosis patients were again more susceptible. The odds ratio was 2.94 and increased with an increasing number of physical comorbidities.
Interestingly, multiple sclerosis patients were significantly less affected by cardiovascular conditions such as atrial fibrillation, chronic kidney disease, heart failure, coronary heart disease, and hypertension. This finding contrasts the findings of some other research groups, and the team believes it requires further investigation.
This study is impactful because it reiterates the fact that multiple sclerosis patients often have a lower health related quality of life and require greater utilization of healthcare services. Not only is this troublesome for patients themselves, but also it is burdensome to caregivers and the healthcare system. Probing further into the reason for a higher rate of comorbidities could alleviate some of the troubles of multiple sclerosis patients. Some studies suggest yoga may improve quality of life for patients, and it is inevitable a number of other interventions can do the same.
Source: Multiple Sclerosis News Today © Copyright 2014 BioNews Services, LLC (08/09/14)
The clincial meaning of 'Walking Speed'(08/09/14)
The Clinical Meaning of Walking Speed as Measured by the Timed 25-Foot Walk in Patients With Multiple Sclerosis.
Cohen JA, Krishnan AV, Goodman AD, Potts J, Wang P, Havrdova E, Polman C, Rudick RA.
IMPORTANCE: Walking impairment, a common clinical manifestation of multiple sclerosis (MS), is often measured in clinical practice and clinical trials using the Timed 25-Foot Walk (T25-FW).
OBJECTIVE: To evaluate the relationship between walking speed measured by the T25-FW and the Physical Component Summary (PCS) score of the 36-Item Short Form Health Survey (SF-36) to better understand the clinical meaning of T25-FW walking speed in MS.
DESIGN, SETTING, AND PARTICIPANTS: We retrospectively analyzed data from 3 clinical trials (Natalizumab Safety and Efficacy in Relapsing-Remitting Multiple Sclerosis [AFFIRM], Safety and Efficacy of Natalizumab in Combination With Interferon Beta-1a in Patients With Relapsing-Remitting Multiple Sclerosis [SENTINEL], and International MS Secondary Progressive Avonex Controlled Trial [IMPACT]) that included T25-FW and SF-36 scores as outcomes in patients with MS. Patients had secondary-progressive MS and an Expanded Disability Status Scale score of 3.5 to 6.5 or relapsing-remitting MS and an Expanded Disability Status Scale score of 0 to 5.0.
MAIN OUTCOMES AND MEASURES: We used Spearman rank correlation and Pearson product moment correlation (r ) and descriptive statistics to evaluate retrospectively the relationship between the SF-36 PCS score and T25-FW walking speed at baseline and the 2-year changes from baseline.
RESULTS: Among all 2549 patients from the 3 trials, walking speed and SF-36 PCS score at baseline were significantly correlated (n = 2333; r = 0.48; P < .001). In placebo-treated patients at 2 years, the percentage of change from baseline in walking speed was significantly correlated with the change from baseline in SF-36 PCS score (r = 0.35; P < .001). Significant correlations between the change in SF-36 PCS scores and the percentage of change in walking speed at 2 years also were observed in groups receiving active treatment (r, 0.13-0.28; P ≤ .005). Among placebo-treated patients, 27.5% had a clinically meaningful worsening (≥5-point decrease) in SF-36 PCS scores during the 2 years. Walking speed declined by 21.8% in these patients after 2 years, but only by 5.4% in those without worsening of SF-36 PCS scores.
CONCLUSIONS AND RELEVANCE: In patients with MS, walking speed measured using the T25-FW correlated with SF-36 PCS scores such that a decline in walking speed of 20% to 25% corresponded to a clinically meaningful worsening of SF-36 PCS scores. A 20% to 25% decline in walking speed may be a clinically meaningful threshold for defining worsening using the T25-FW in MS clinical trials and for monitoring patients in clinical settings.
Sources: JAMA Neurol. 2014 Sep 1. doi: 10.1001/jamaneurol.2014.1895. [Epub ahead of print] & Pubmed PMID: 25178496 (08/09/14)