Quality of life
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 But in draft guidance published by Nice (National Institute for Health and Care Excellence), the drug was not considered to "represent cost-effectiveness".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)
Physical Disability, Anxiety and Depression in People with MS: An Internet-Based Survey via the UK MS Register.
Jones KH, Jones PA, Middleton RM, Ford DV, Tuite-Dalton K, Lockhart-Jones H, Peng J, Lyons RA, John A, Noble JG.
INTRODUCTION: People with Multiple Sclerosis are known to have a relatively high prevalence of both anxiety and depression. Studies of the relationship between physical disability and mental health in people with MS have reported mixed results, showing the need for further work.
METHODS: Between May 2011 and April 2012, 4516 people completed the MSIS-29 (v.1) and HADS scales via the dedicated internet site of the UK MS Register within a 7 day time window. These responses were linked with basic demographic and descriptive data and analysed in SPSS (v.20).
RESULTS: The proportions of people experiencing anxiety or depression increased with physical disability such that 38.0% of respondents with low, and 66.7% with high disability reported at least mild anxiety, and 17.1% of people with low, and 71.7% with high disability experienced at least mild depression. The multiple regression model explained 18.4% of the variance in anxiety with MSIS-29-PHYS score being the strongest predictor of anxiety. The model for depression explained 37.8% of the variance with MSIS-29-PHYS score being the strongest predictor. Some of the other variables included showed negative associations with anxiety and depression, indicating that the influence of physical disability on mental wellbeing could be underestimated.
CONCLUSIONS: This study indicates that there is a positive relationship between physical disability and anxiety and depression, that physical disability impacts on anxiety and depression to differing extents, and that the effects vary with gender, age, disease course and disease duration. We have shown that physical disability is a predictor of anxiety and depression, and that other factors may mask the extent of this effect. Whether the causes of anxiety and depression are reactive, organic or a combination, it is essential that mental wellbeing is given due attention in caring for people with MS so that all their health needs can be met.
Source: PLoS One. 2014 Aug 25;9(8):e104604. doi: 10.1371/journal.pone.0104604. eCollection 2014 & Pubmed PMID: 25153835 (28/08/14)
An estimated 2.3 million people worldwide live with multiple sclerosis (MS) each day, a debilitating disease that can often cause severe pain, muscle spasms, poor circulation, anxiety, stress and clinical depression. Although not a substitute for regular MS treatment, massage therapy is an effective, complementary and alternative medicine (CAM) that can alleviate such symptoms and in turn, help to pacify the disease.
MS develops as a result of interference between the brain, spinal cord and other areas of the body. Symptoms and treatment vary widely depending on the amount of nerves that are affected. Massage therapy is an easy and affordable complement to doctor-prescribed treatments. Massage therapy may assist MS patients in managing the stress of their symptoms and to improve their quality of life.
A study reported in the Multiple Sclerosis Journal indicated lower pain levels of up to 50 percent across three months by those participants who received 10 weeks of massage therapy. Long known for its stress-busting abilities, massage has a powerful effect on health and overall well-being. And because stress may trigger or worsen MS symptoms, it is important for sufferers to find ways to relax.
"Massage therapy is a well-being approach for addressing body, mind and spirit. Along with stress reduction, massage therapy can help to increase flexibility and reduce muscle stiffness caused by spasticity," states Erin Kersanty, Regional Therapist Coordinator for Massage Envy Spas in the Greater Cleveland-Akron-Canton region. "Massage therapy is also very effective at increasing deep sleep, as touch itself has been known to create positive feelings such as comfort and care. And with more deep sleep, you have less pain," added Tiffany Field, Ph.D., of the University of Miami's Touch Research Institute.
Source: News Medical.Net (28/07/14)
Multiple Sclerosis (MS) is a common neurodegenerative disease, which often has a devastating effect on physical and emotional wellbeing of people with MS (PwMS). Several studies have shown positive effects of physical activity (PA) on disability, health related quality of life (HRQOL), and other outcomes.
However, many studies include only people with mild disability making it difficult to generalise findings to those with moderate or severe disability. This study investigated the associations between PA and HRQOL, relapse rate (RR), disability, and demographic variables in PwMS with varying disability.
Methods: Through online platforms this large international survey recruited 2232 participants with MS who completed items regarding PA, MS and other health characteristics.
Results: PwMS who were younger (p <.001), male (p = 0.006), and with lower body mass index (BMI) (p <.001) undertook more PA, which was associated with decreased disability (p <0.001) and increased HRQOL measures (all p <0.001).
For the subsample of people with relapsing-remitting MS, PA was associated with a decreased RR (p = 0.009). Regression analyses showed that increased PA predicted clinically significant improvements in HRQOL while controlling for level of disability, age and gender.
More specifically, increasing from low to moderate and to high PA increased estimated mean physical health composite from 47.7 to 56.0 to 59.9 respectively (25.6% change), mental health composite from 60.6 to 67.0 to 68.8 (13.5% change), energy subscale from 35.9 to 44.5 to 49.8 (38.7% change), social function subscale from 57.8 to 66.1 to 68.4 (18.3% change), and overall QOL subscale from 58.5 to 64.5 to 67.7 (15.7% change).
Conclusions: For PwMS, regardless of disability level, increased PA is related to better HRQOL in terms of energy, social functioning, mental and physical health. These are important findings that should be taken into consideration by clinicians treating PwMS.
Author: Claudia H MarckEmily, J Hadgkiss,Tracey J Weiland, Dania M van der MeerNaresh, G Pereira, George A Jelinek
Credits/Source: BMC Neurology 2014, 14:143
Source: 7th Space Interactive © 2014 7thSpace Interactive (15/07/14)
Individuals with multiple sclerosis (PwMS) often have mobility impairments that may lead to falls and limitations in activities. Physiotherapy interventions that could improve mobility typically take several weeks. Balance-based torso-weighting (BBTW), a system of strategically placing light weights to improve response to balance perturbations, has resulted in immediate small improvements in clinical measures in PwMS, but changes in spatiotemporal gait parameters are unknown. The purpose was to examine the effects of BBTW on gait parameters in PwMS and healthy controls. This study is a non-randomized controlled experiment. The study was comprised of 20 PwMS and 20 matched healthy controls.
Individuals with multiple sclerosis walked on an instrumented mat at their fastest speed for three trials each in two conditions: without BBTW then with BBTW. Healthy controls walked in both conditions at two speeds: their fastest speed and at velocities equivalent to their matched PwMS. Averaged gait trials showed that, with BBTW, PwMS had significantly increased velocity (p = 0.002), cadence (p = 0.007) and time spent in single-limb support (p = 0.014), with reduced time in double-limb support (p = 0.004). Healthy controls increased velocity (p = 0.012) and cadence (p = 0.015) and decreased support base (p = 0.014) in fast trials with BBTW; at matched velocities, step length (p = 0.028) and support base (p = 0.006) were significantly different from PwMS. All gait variables in healthy controls at fast speeds were significantly different from PwMS walking at their fastest speeds.
All participants displayed increases in gait velocity and cadence during fast walk with BBTW. Improvements in time spent in single-limb and double-limb support by PwMS with BBTW may reflect greater stability in gait. Future research might ascertain if these immediate improvements could enhance effectiveness of longer-term physiotherapy on functional mobility in PwMS.
Abstract - http://onlinelibrary.wiley.com/doi/10.1002/pri.1595/abstract
Source: Physiospot Copyright © 2014 Physiospot (10/07/14)
• This study presents patient perspectives on the impact of relapse early in MS therapy.
• Patients often do not report relapses to healthcare professionals.
• Relapse affects patients? finances and ability to work and undertake routine daily tasks.
• Despite relapse, patient persistence with disease modifying therapy is good.
• Reporting and documentation of relapses need improvement if relapse reduction is to remain a key goal of treatment.
Background: The fixed, progressive disability associated with late Multiple Sclerosis (MS) is known to have a major impact on patients and their families, but the impact of relapse earlier in the disease course is less well documented, particularly from the patient?s perspective. This study aimed to understand the effects of relapse for people with MS (PwMS), focussing on the years immediately after starting disease modifying therapy (DMT) when experience of a relapse may particularly influence a patient?s opinions of their disease and its therapy.
Methods: This was a multi-centre, retrospective, observational research study, recruiting patients from 7 UK NHS Hospital Trusts. Consenting patients with relapsing-remitting MS (RRMS), who had started a DMT more than 36 months before screening, were sent a study questionnaire. Data on MS relapses and treatments over 3 years were collected simultaneously from medical records.
Results: One hundred and three patients completed the questionnaires. Relapses were under-reported to health care professionals, with 28% of respondents failing to report their most recent attack and 46% declaring they had failed to report an attack in the past. During their most recent relapse, 67% of those in paid employment reported taking time off sick, 48% reduced working hours temporarily, and 41% worked reduced hours and took time off sick. Sixty-six percent required additional support to undertake routine daily tasks during their most recent relapse. A range of effects of relapse which cannot be measured in financial terms were also reported, including effects on physical abilities, mental health and family roles and relationships.
Conclusion; This contemporary UK-based study provides an insight into the experience of relapse early in the treatment of RRMS from the patient perspective. The comparison of documented patient reported relapses reveals some deficiencies in the recording of relapses which is important to address in view of the reported impact of individual relapses, and emphasises relapse reduction as a worthy treatment aim.
Martin Duddy, Martin Lee, Owen Pearson, Esmaeil Nikfekr, Abhijit Chaudhuri, Fran Percival, Megan Roberts, Carolyn Whitlock
Source: Science Direct Copyright © 2014 Elsevier B.V (08/05/14)
More common than anyone suspects, the unspoken issue of sexual dysfunction affects more than half of the MS population.
Researchers delved into the private lives of men with multiple sclerosis (MS) in a recent study and discovered that sexual dysfunction is a common MS complication. Although it’s a topic patients may be reluctant to discuss with their neurologists, they should be aware that intimacy problems are often treatable.
Scientists from the Institute of Psychiatry and Neurology in Warsaw, Poland, interviewed 67 men with MS who were members of the National MS Center. The participants also filled out questionnaires and underwent neurological evaluations, all in an attempt to measure their sexual satisfaction.
Of those 67 men, researchers found that more than half complained of erectile dysfunction (ED), roughly a quarter reported decreased interest in sex or had issues reaching climax, and nearly a fifth had difficulty with ejaculation. These results didn’t seem to depend on the patient’s age, the amount of time since his diagnosis, or his level of disability.
A 'Wall of Silence'
The researchers concluded that sexual dysfunction "is highly prevalent but commonly overlooked in MS patients and has a significant impact on their sexual quality of life.” Despite these widespread issues, the researchers found that only 6 percent of the study participants had spoken about these problems with their doctor.
The discrepancy between the number of men who suffer from sexual dysfunction and those who report it to their doctor is probably due to the taboo nature of the topic.
Most likely, the subject doesn't come up, according to Megan Weigel, DNP, ARNP-C, MSCN, in an interview with Healthline, "because sexual dysfunction is a sensitive issue both for the person with the problem and the healthcare provider. However, it is possible that people with MS may not know it can be a symptom of the disease."
But if patients can put aside their discomfort long enough to have a frank conversation with their doctor—dropping the wall of silence—it may be possible to treat the problem.
Sexual Dysfunction Isn’t Just for Men
In an earlier study, the same group of researchers looked at sexual dysfunction in women with MS. While the researchers identified real issues faced by more than three quarters of the patients studied, only 2.2 percent of these women ever told their doctors about their sexual difficulties.
Among the problems women reported were lack of desire, decreased sensation in the genitals, poor lubrication, and an inability to climax. The study found that sexual dysfunction was "less likely in women who assessed their relationship positively but more common in older patients and those who had a positive history of depression.”
In the case of both male and female sexual dysfunction, the problem appears to be widely under-reported and overlooked by medical professionals.
Communication Is Key
MS is a disease that compromises the central nervous system, and sexual side effects are common among patients. Neurologists are trained to treat all aspects of the disease, including sexual complications. Understanding that it is a side effect of MS, and not due to any personal inadequacy, should quell the anxiety patients feel about discussing intimacy problems with their doctor.
The researchers stressed that neurologists should put more emphasis on sexual dysfunction when they examine their patients and have better screening tools in place. Doctors can treat problems only if they know symptoms exist, so, for patients, speaking up is imperative.
Sexual Dysfunction Defined
According to a 2009 article in MSFocus written by Frederick W. Foley, Ph.D., there are three types of MS-related sexual dysfunction: primary, secondary, and tertiary.
Primary dysfunction is caused by damage to the nerves from MS. Signals from the brain can no longer travel to parts of the body involved in sexual activity. Genital numbness is a classic example of primary dysfunction.
Examples of secondary dysfunction are bowel or bladder issues, spasticity or hand tremors—anything that indirectly complicates intimacy.
The tertiary variety of dysfunction is caused by the emotional aspects of MS—psycho-social or cultural issues that can impact a person’s feelings about sex. Body image, mood swings, and self-esteem can all affect intimacy. The changing dynamic of relationships—when life partners become caregivers, for example—can also play a role in tertiary sexual dysfunction.
Improving Sexual Quality of Life
Patients need not suffer in silence. "There are several ways to help men with MS who suffer from ED," Weigel said. "Medications like Viagra, Cialis, and Levitra may be helpful. If they are not, there are injectable medications and mechanical devices that may be required." For women, lubricants such as K-Y Jelly can help with vaginal dryness, and exploring new techniques for arousal might address loss of libido.
"Sexual dysfunction can be caused by side effects of medications like antidepressants, muscle relaxants, pain medications, and anti-seizure drugs; other medical conditions that affect small blood vessels, like diabetes and hypertension; and psychological issues, like loss, role changes, fear of failure, depression, and anxiety," Weigel said. "Timing of medication dosing, and timing of sexual activity so that it occurs at the time of day with the least fatigue can be helpful. Counseling and sex therapy are also very useful in conquering physical and emotional problems related to sexual dysfunction."
"Remember that as healthcare providers, we should be able to listen with a nonjudgemental, open ear in a nonthreatening environment to sensitive issues," Weigel added. She also suggests that patients write down their concerns and give the list to their doctor. "This could result in an open discussion that would put the person more at ease," she said.
Source: Healthline Copyright © 2005 - 2014 Healthline Networks, Inc (17/04/14)
Multiple sclerosis (MS) can be devastating to younger individuals given that it usually strikes during the peak productive ages of 20 to 50 years. When patients with MS are confronted with this potentially debilitating condition and the recognition that no cure for MS currently exists, their quality of life (QOL) can suffer.
Recent research indicates that patients with MS report QOL that falls more than 1 standard deviation below that of the general population (mean health state score 59.7 ± 22.4 for patients with MS versus 82.5 for the general population).1 In this registry study of 4516 patients with MS, health-related QOL ranked poorly, particularly in men, older individuals, people with a long duration of MS, and those with a progressive form of the disease. Among the total cohort of MS patients, about 83% reported difficulties with usual activities, 76% indicated problems with pain or discomfort, 76% struggled with mobility, and 58% reported problems with anxiety or depression.
Although disease-modifying therapies hold promise for reducing MS symptoms, preventing relapse, and delaying disease progression, many of these agents produce little improvement in QOL.2,3 This suggests that either better disease-modifying therapies or adjunctive treatments may be needed to improve specific MS symptoms in order to positively influence QOL.
Two comorbid conditions that are particularly relevant in individuals with MS and which are amenable to symptomatic treatment are pain and depression. “Researchers from our team and others in the field have consistently noted a strong association between depression and pain severity, but elements of the pain-depression relationship haven’t been fully researched, particularly in individuals with MS,” said Kevin Alschuler, PhD, acting assistant professor in the Department of Rehabilitation Medicine at the University of Washington School of Medicine in Seattle.
To better address this issue, Dr. Alschuler and colleagues surveyed 161 individuals with MS to evaluate the prevalence of pain and depression using a variety of methods for defining these conditions.4 The findings were striking: “As many as 1 in 5 patients with MS experience both pain and clinically significant depression, and 42% to 78% of patients with MS experience pain, depression, or both,” Dr. Alschuler noted.
The results not only reinforce the importance of considering both pain and depression in patients with MS, they also lend insight into the pattern of these comorbidities. For example, “When depression was present, pain was highly likely to also be present. Relatively few patients in our sample had depression without also having pain,” said Dr. Alschuler, who also found that patients with comorbid depression visited medical providers more frequently for pain relief and used a greater number of pain treatments than patients without comorbid depression.5
Recognizing that a large treatment gap in QOL exists for patients with MS is half the battle; the other half is taking proactive measures to address the situation. Dr. Alschuler believes that, in addition to managing symptoms and delaying disability progression, assessing and promoting patient QOL should be a primary goal of MS treatment.
“We’re very interested in having our research impact clinical practice and, in fact, believe that it has already helped us take our first steps in that direction,” said Dr. Alschuler, whose research team recently received grant funding for a study that seeks to improve the model of care for depression and pain in patients with MS.
This new study will aim to compare the delivery of standard care versus collaborative care to 200 outpatients with MS who have depression, chronic pain, or both. Under the collaborative care approach, a care manager—that is, a nurse supervised by expert physicians, psychiatrists, and psychologists—will coordinate and provide evidence-based therapy for depression and pain that matches the patient’s goals and preferences. Although this strategy has proven successful across a variety of ailments, it has never been evaluated in patients with comorbid MS, pain, and depression.
“We’re particularly excited about the specific care model we’re testing, as we believe that it would be feasible for the model to be implemented in standard clinical practice if our study supports its use,” said Dr. Alschuler.
By Kara Nyberg, PhD
Jones KH, Ford DV, Jones PA, et al. How people with multiple sclerosis rate their quality of life: an EQ-5D survey via the UK MS Register. PLoS One. 2013;8:e65640. Abolfazli R, Hosseini A, Gholami Kh, et al. Quality of life assessment in patients with multiple sclerosis receiving interferon beta-1a: a comparative longitudinal study of Avonex and its biosimilar CinnoVex. ISRN Neurol. 2012;2012:786526.
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Source: MedPage Today © 2014 Everyday Health Media, LLC (12/03/14)
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)