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Saturday, November 4, 2017

Managing Pregnancy in MS - Printed text and video


Maria Houtchens, MD, of Brigham & Women's Hospital, on relapse rates before, during, and after pregnancy

by MedPage Today Staff

August 15, 2017
  • Click here to download the poster.
    This poster is about relapse rates before, during, and after pregnancy in the MS patient population. It's a retrospective claims database analysis that was performed looking at administrative claims data that came from IMS Health real-world data claims, which is really the only way in this country that we can have very large datasets that we can analyze for whatever questions are of interest to us.

We care for a lot of young patients in multiple sclerosis, which is unique. Neurology generally is thought of as a specialty of older people, but MS, and a few other subspecialties, really cater to younger populations. In MS in particular, it's an autoimmune disease, so there are a lot more women than men affected.

Ultimately, we have young women with a chronic, neurologic autoimmune disease, and a lot of our women want to become moms. That's part of their life goal, so it's very important to be able to counsel them and to give them real information based on data -- what their risks are, what the benefits might be, and how their disease is going to behave before, during, and after pregnancy.

There's not much information, unfortunately, especially not in the United States. The first and probably the best-performed study in the subject was done in Europe and was published in 1998 in the New England Journal of Medicine. It was a French group that conducted the study. The author was Confavreux and it was called the PRIMS study. So that project looked at relapse rates before, during, and after pregnancy and really was the first study with few patients, relatively few patients, about 227 I believe, that presented to the world the outcomes of pregnancy and multiple sclerosis and the outcomes of multiple sclerosis as it related to pregnancy.

In the United States ... when we did a literature research, we were surprised just to how little is known and published about this. So this is one of the reasons that we've undertaken this project.

Continue




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Confirmed Disability Improvement (CDI) in Multiple Sclerosis




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Friday, November 3, 2017

Anti-Inflammatory Drug May Offer Benefit in Progressive MS

Ibudilast seems to diminish brain volume loss

by  Deputy Managing Editor, MedPage Today


PARIS – An old compound with a novel mechanism of action for a multiple sclerosis drug may diminish brain volume loss in progressive MS, researchers reported here.
In a phase II trial, ibudilast was associated with a 48% relative reduction in the rate of decline in brain atrophy as measured by brain parenchymal fraction (BPF) scanning over 96 weeks (P=0.04), according to Robert Fox, MD, of the Cleveland Clinic, and colleagues.
Ibudilast acts on many pathways. It's a macrophage migration inhibitor factor, a phosphodiesterase-4 (PDE-4) and PDE-10 inhibitor, and it's a toll-like receptor 4 (TLR4) inhibitor.
It was approved in Japan in 1989 for use in bronchial asthma and post-stroke dizziness, and has been shown in recent studies to reduce atrophy in relapsing-remitting MS. Animal models have also suggested that it may be neuroprotective, Fox said in a presentation at the joint ECTRIMS-ACTRIMS meeting.
His group conducted a phase II study in 255 patients with primary or secondary progressive MS, mean age 56, at 28 sites across the U.S. All patients had evidence of disability progression in the previous 2 years.
They were randomized to placebo or to ibudilast at a dose of up to 100 mg/day and followed for 96 weeks. The primary outcome was change in brain atrophy as measured by brain parenchymal fraction, and secondary outcomes included magnetization transfer ratio (MTR) -- a measure of normal tissue -- and diffusion tensor imaging (DTI).
Fox's group also performed optical coherence tomography (OCT) and cortical atrophy assessments, but those results had not been analyzed at the time of the presentation.
A total of 244 patients were included in the modified intention-to-treat population for efficacy analyses, and there was an 86% retention rate through week 96.
In addition to meeting its primary endpoint, the drug was generally safe and well tolerated. Certain treatment-emergent adverse events were more common with ibudilast, including gastrointestinal issues such as nausea, diarrhea, and abdominal pain, as well as a larger proportion of depression (9% versus 3%).
When analyzing treatment-related adverse events, gastrointestinal events driven by nausea remained significant, as did depression. Rash and fatigue were also more common with the drug.
But there were no differences in serious adverse events or in overall tolerability, Fox said.


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Learn information concerning the new diagnostic criteria of #MS


LISTEN to this video by Aaron Boster, MD --



then share the intellectual conversation regarding Diagnostic Criteria of Multiple Sclerosis....











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Myelin-producing Brain Cells Regenerated Using Stem Cells in Early Study


Researchers, using two different kinds of stem cells in rats, were able to regenerate oligodendrocytes — myelin-producing brain cells that are defective in multiple sclerosis (MS). They were also able to grow adult neural stem cells (NSCs, immature cells of the nervous system) in laboratory cultures and prod them to develop into oligodendrocytes.

Myelin-producing Brain Cells Regenerated Using Stem Cells in Early Study

The exact cause of MS is unknown — including what triggers attacks on myelin — but the loss of oligodendrocytes seen in the disease is known to play a role in its progression.

Nerve cells in the brain send their signals through their axons, long arm-like structures that extend out from the centers of the nerve cells. The signals are electrical pulses transmitted along the length of an axon. Oligodendrocytes provide the insulation — called myelin — that wraps around axons, speeding up the transmission of electrical signals through the nerve cells.
Loss or malfunction of oligodendrocytes means that signaling in the brain is impaired. It is this slowing of signaling that is thought to cause MS symptoms.
Researchers from the Heinrich-Heine-University, Germany, with support from British and Chilean colleagues, designed a novel approach to regenerate oligodendrocytes, according to a press release.
Stem cells are immature cells that give rise to differentiated cells — cells with a specific function, such as oligodendrocytes.
Adult neural stem cells can divide and produce nerve cells and other brain cells, including oligodendrocytes. However, in normal circumstances, the regeneration of cells that take place in the human brain is not enough to repair the damage seen in MS.

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Thursday, November 2, 2017

New study researches brain changes in people with multiple sclerosis

A new study sheds light into the symptoms of multiple sclerosis (MS).



It is a disease where the body attacks its own central nervous system. 
While there is no cure, researchers want to know what happens in the brain early in the progression of the disease, with the ultimate goal of finding something to stop it.   
Sarah Maurer was 23 years old when her body went numb from the neck down.
"I couldn’t brush my own hair," she says. "I had no control over my hands."
Soon after, she was diagnosed with MS. With no cure, the only remedy is medicine and research.
According to a recent study published in the medical journal of the American Academy of Neurology, each MS relapse impacts what is stored in a patient’s brain reserve. This could be why MS patients have a tougher time understanding social cues.
"I have a harder time picking up sarcasm from my 15-year-old," Maurer says. "He says, 'Mom I’m joking.'"

( watch video with Sarah, by clicking here )
While Maurer took medication for MS, her relapses and symptoms continued. Thanks to recent medical advancements, she now takes a new pill and it is working.
"When I had my MRI in 2016, I had enhancing lesions and new lesions," Maurer says. "And that was scary. I had an MRI in March; nothing enhancing and nothing new.”
Doctor Augusto Miravalle, associate professor of neurology at the University of Florida, says there are now 15 approved medications doctors can use to stop MS from getting worse.
"With our therapies, we pretty much expect nothing new," he says. "So, no new lesions in the brain, and no relapses or no clinical attacks as well as no evidence of disease progression.”
Maurer’s advice to others in her shoes: keep a fighting spirit — the one thing a disease can’t control.
"I just do my best to stay more than two steps ahead of it," she says. "Catch me if you can."
On the brain scans, compared to the healthy people, those with MS had widespread abnormalities in their white matter, with the most extensive damage in areas that play an important role in the brain's network. The more damage people had in these areas of the brain, the more likely they were to also have low scores on the clinical tests.



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Wednesday, November 1, 2017

Review: MS PARIS 2017, the joint ECTRIMS/ACTRIMS Meeting

featured image




Conference details: 25-28 October, Paris, France
Report by: Angeliki Zarkali, Neurology Registrar, East Kent University Hospitals Foundation Trust, ABN Trainee Committee Secretary
Twitter: @Angelika_Za
Conflict of Interest Statement: None declared
Published online: 28/10/17

The 7th joint ECTRIMS/ ACTRIMS conference (#MSParis2017), held this year in Palais de Congress in Paris, just closed its doors after 4 days of exciting clinical and research advancements. With more than 10,000 delegates and 3978 abstracts, this was the largest conference in Multiple Sclerosis so far.


Musee D’ Orsay at Night during the Conference Networking Event. Picture: Angelika Zarkali

The programme was full, starting on Wednesday 25th of October with a day aimed at registrars and junior consultants including 18 teaching courses on clinically salient topics across the whole of the MS spectrum, as well as two “Nurses sessions,” emphasising the important of MS Specialty Nursing both for clinical outcomes and research advancements.

The main conference started the following day with an unexpected cabaret performance, followed by a lecture by Dr Hans Lassman, University of Vienna, that succinctly explained the advances made in clarifying the pathophysiology of this inflammatory disorder, the insights into the phenotype of brain infiltration by T and B lymphocytes, the clinical implications of these findings and further questions for research.

Over the next 3 days, during the 25 parallel sessions, more than 2000 posters and multiple sponsored symposia, we heard about clinical and scientific advances in adult and paediatric MS, as well as other demyelinating conditions such as Neuromyelitis Optica spectrum disorders. The most important findings presented at this year’s ECTRIMS/ACTRIMS meeting, that will imminently affect clinical practice are:
The 2017 Revision of the McDonald Criteria were presented by Jeffrey Cohen, Cleveland Clinic in one of the most well-attended sessions, followed by an in-depth presentation of the implications of the new criteria for clinicians by Jeremy Chataway, National Hospital for Neurology and Neurosurgery. The main changes in the criteria are:
In patients with a typical Clinical Isolated Syndrome and fulfilment of the Dissemination in Space (DIS) criteria, the presence of oligoclonal bands (OCBs) can now support the diagnosis of MS. This may cause a key change in current clinical practice for many.
Cortical lesions are included in the Dissemination in Time (DIT) criteria.
‎Primary progressive MS criteria have remained the same but also now include cortical lesions.
No distinction is made between symptomatic and non-symptomatic lesions.
Advancements in the treatment of Progressive MS: “We can treat progressive disease although results have been modest so far;” this was an encouraging theme throughout the meeting, with many presentations highlighting the emergence of new data to support the emergence of treatment options soon for a previously untreatable condition.
Ocrelizumab (ORATORIO study):

Humanised monoclonal anti CD20 antibody.

This was the first positive phase 3 clinical trial in Primary Progressive MS showing that Ocrelizumab is reducing disability progression in SPMS. An open label extension trial was recently completed showing that ocrelizumab effect is sustained with ongoing treatment. The benefit of DMTs in older patients may be reduced, particularly in progressive MS.
Siponimod (EXPAND trial):

Selective modulator of Sphingosine 1 Phosphate receptor.

Significantly delayed disability progression by 26% in 6 months in patients with Secondary Progressive MS. Siponimod also reduced MRI disease activity and brain volume loss at 12 and 24 months.
Ibudilast (SPRINT- MS trial):

Phosphodiesterase and macrophage inhibitory factor inhibitor.

Initial data showed that ibudilast slowed the progression of brain atrophy in progressive MS (both primary and secondary).
Natalizumab improving upper limb function in SPMS:

Although not improved EDSS or lower limb function, natalizumab led to improvement in upper limb function (9hole peg test) in SPMS patients.
Future Pipeline:

Progressive MS is an active research area with many ongoing trials including MS STAT2, SPI2, MS SMART as well as new molecules such as Laquinimod, Mastinib (tyrosine kinase inhibitor), Ibudilast and Idebenone.
New treatment options for Relapsing Remitting MS:
Ozanimod (RADIANCE trial):

Highly selective Sphingosine 1 Phosphate receptor agonist.

In a multicentre, randomised, double blind trial examining ozanimod versus interferon in patients with active disease, ozanimod was found to have a 38% reduction in annual relapse rate over 3 years compared to interferon.

In addition, secondary endpoints were met, including reduction in the number of T2 lesions and reduction in total brain volume loss and grey matter volume loss at 2 years. Although there were some cardiac effects, these were relatively mild.
Opicinumab (SYNERGY trial):

Anti lingo 1 monoclonal antibody.
READ MORE



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Application of κ free light chains in cerebrospinal fluid as a biomarker in MS diagnosis


Valencia-Vera E, et al. Clin Chem Lab Med. 2017.

Abstract

BACKGROUND: The determination of κ free light chains (KFLC) in cerebrospinal fluid (CSF) by nephelometry is a feasible alternative to immunoglobulin G oligoclonal bands (OCB) in the evaluation of intrathecal synthesis of immunoglobulin in multiple sclerosis (MS) and other demyelinating diseases. The aim of this study was to assess the diagnostic value of KFLC and its inclusion in a procedure algorithm along with OCB interpretation.
METHODS: A cross-sectional study, which included 123 patients with a CSF OCB request, was carried out. Isoelectric focusing followed by immunofixation was used to detect OCB, and nephelometry was used to analyze KFLC. The KFLC index was calculated using CSF/serum quotient of KFLC and albumin. The KFLC index was compared with MS diagnosis to find the optimal cutoff. It was obtained from the receiver operating characteristic (ROC) curves and the Youden method.
RESULTS: The CSF KFLC median was 1.66 mg/L in the MS group, whereas in other central nervous system diseases, KFLC showed generally no or only moderate increase in CSF (median 0.10 mg/L). KFLC index showed a significant difference between groups. ROC analysis for CSF KFLC concentration, and KFLC indexes were 91.88% and 93.94%, respectively. The best cutoff for the KFLC index was 2.91 for MS diagnosis (sensitivity: 83.78%; specificity: 85.88%). The proposed algorithm showed high sensitivity (89.19%) and specificity (84.71%).
CONCLUSIONS: KFLC determination is rapid and automatized, but it has no higher sensitivity and specificity than OCB in MS diagnosis. Nevertheless, when used in screening, it could reduce the number of manual OCB tests.

PMID

 29087953 [PubMed - as supplied by publisher]

Full text





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EVOLVE-MS-1 Interim Trial Data Shows Alkermes Therapy Safe for Treating Relapsing MS

#MSParis2017 – EVOLVE-MS-1 Interim Trial Data Shows Alkermes Therapy Safe for Treating Relapsing MS

Preliminary data from the Phase 3 EVOLVE-MS-1 trial shows that ALKS 8700 — an investigative therapy developed by Alkermes to treat relapsing forms of multiple sclerosis (MS) — has a good safety and tolerability profile.
ALKS 8700 is an oral compound. Once inside the body, it is rapidly transformed into the therapeutic compound monomethyl fumarate (MMF). Although similar, this drug candidate was designed to offer features different than those achieved with the commercially available Tecfidera (dimethyl fumarate).

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Disclosing Your MS Diagnosis to Friends and Family (Video and printed text)

November 1, 2017 - BY WENDY HENDERSON


We understand how difficult it is to tell your family, friends and coworkers that you have multiple sclerosis. While it might not be easy, at some point you will have to share this new chapter of your life with those around you.





This film from emspvideos focuses on multiple sclerosis and relationships. It explores how people with MS are often reluctant to tell people that they have been diagnosed with the disease.
The patients featured explain how people reacted when they told them they had MS, and offer practical advice on how to broach the subject.

Read more


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#MSParis2017 – MS Places Heavy Burdens on Women, Study in 8 European Countries Shows

November 1, 2017 - BY ALICE MELÃO IN NEWS.

Multiple sclerosis (MS) can have severe implications on the lives of European women with the disease, finds a new report, affecting their education, their careers and their relationships.


#MSParis2017 – MS Places Heavy Burdens on Women, Study in 8 European Countries Shows

This disproportionate burden of MS in women versus men was the focus of a study, “The Socioeconomic Impact of MS on Women in Europe,” that was commissioned by Merck and presented Oct. 25 at the 7th Joint ECTRIMS-ACTRIMS Meeting in Paris.
Conducted by Charles River Associates, it involved MS associations in the Czech Republic, France, Germany, Italy, Poland, Spain, Sweden and the United Kingdom. Together, these eight countries are home to 72 percent of Europe’s MS population, and an estimated 77 percent of European women with MS.
The study — based on a review of available literature, interviews and an online survey of 807 women with MS — revealed that about 21 percent of survey respondents had been misdiagnosed prior to their real MS diagnosis. On average, women have to go through five visits to clinical practitioners and spend about half a year to be correctly diagnosed.
This delay creates a sense of uncertainty and emotional upheaval, preventing a suitable and early therapeutic intervention. Even worse, it also threatens relationships. About 41 percent of the women who responded to the survey had separated or divorced since their MS diagnosis; of these, 88 percent said MS was a contributing factor in the decision. In addition, 36 percent said MS had forced them to decide not to have children at all, or to alter the timing of when to get pregnant.


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Invisible Illness Awareness: The Struggle Continues

Oct 31, 2017
IN COLUMNS, PATIENTLY AWAKENED - A COLUMN BY TERESA WRIGHT-JOHNSON.


Invisible Illness Awareness: The Struggle Continues

Last week was Invisible Illness Awareness Week, which ran from Oct 14-20. Awareness weeks are designed to bring attention to certain conditions, issues and situations. They are directed at creating consciousness and disseminating information. Sadly, invisible illness is a subject that needs much more attention.
Those of us with chronic illness, whose symptoms are undetected by the human eye, continue to be scrutinized and judged unjustly. We are questioned publicly and often are made to feel as if we have to explain the scope of our illness. We believe we must substantiate our ailments sometimes feeling as if our failure to do so makes us look as if we are feigning illness. There have been several times when I felt as if I had to divulge my MS diagnosis and injuries. If I need assistance at the airport, I feel compelled to explain why. I can offer many other examples, yet I am certain you comprehend the gist.
I still have situations in which my illnesses are questioned by insensitive people who just don’t understand. The ignorant belief that if you look fine then you must be fine prevails. I try to remain unaffected by the idiocy, but the plight still saddens me.


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Two Studies Show IL-35 Protein’s Potential to Curb Inflammation in Autoimmune Diseases


October 24, 2017

An immune signaling protein called interleukin-35 has anti-inflammatory properties that scientists might harness to develop a therapy for multiple sclerosis and other autoimmune disorders, according to two studies.
Researchers at the National Eye Institute of the National Institutes of Health discovered that a subunit of interleukin 35, which is also known as IL-35, significantly reduced inflammation in mouse models of eye inflammation and multiple sclerosis.
Immune B-cells produce IL-35 to communicate with, and regulate the behavior of, surrounding cells. In a previous study, the research team found that the protein could inhibit inflammation in the eyes of animals with autoimmune uveitis, or inflammation of the inner layers of the eye. An autoimmune disease is one in which the immune system attacks healthy cells instead of invaders.
A drawback of trying to use a synthetic version of IL-35 as a therapy is that it’s difficult to produce because of its complex structure and it’s unstable in a solution. Natural IL-35 is composed of two subunits, IL-12p35 and Ebi3, which bind to create the full protein.
The team wondered if they could use a subunit, instead of the full protein, as an anti-inflammatory agent. Their study, “IL-12p35 induces expansion of IL-10 and IL-35-expressing regulatory B cells and ameliorates autoimmune disease,” was published in the journal Nature Communications,
They demonstrated that the IL-12p35 subunit could generate anti-inflammatory effects similar to those of the full IL-35 protein.
Giving IL-12p35 to mice with uveitis promoted the expansion of immune B-cells that counteract autoimmune responses, reversing the animals’ eye symptoms.
“These individual subunits may form a new generation of biologics that can be used to treat autoimmune and neurodegenerative diseases,” Dr. Charles Egwuagu, chief of the Molecular Immunology section at the National Eye Institute’s Laboratory of Immunology, said in a news release. He was senior author of the study.
In the second study, researchers discovered that the subunit tempered inflammation in a mouse model of multiple sclerosis. Giving the animals IL-12p35 every other day for up to 12 days promoted immune cell proliferation that inhibited inflammation in the mice’s brains and spinal cords, improving their symptoms.
The research demonstrated IL-35 and its subunit’s potential to treat nerve-inflammation disorders. The team published its findings in the journal Frontiers of Immunology. The article is titled “IL-12p35 inhibits neuroinflammation and ameliorates autoimmune encephalomyelitis.


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Open Enrollment for Marketplace and Medicare Plans

October 13, 2017
Each year, open enrollment periods provide time to review your options and make sure you’re enrolled in the health insurance plan that offers the best coverage for services and medications at the lowest possible cost. Even if you like your current plan, costs and coverage may change in the coming next year. Read more about health insurance and Medicare or contact an MS Navigator at 1-800-344-4867 (regular business hours) or online
 
The dates for Marketplace open enrollment have changed  
 
Marketplace plans are available for anyone who is not eligible for health insurance from other sources (such as Medicare, Medicaid or employer-based coverage). To enroll in coverage that takes effect on January 1, 2018, you must enroll between November 1 and December 15th, 2017. During this open enrollment time, you can:
  • Enroll in a Marketplace plan for the first time
  • Re-enroll in a Marketplace plan. Current enrollees MUST re-enroll every year, or select and enroll in a new plan. If current enrollees do nothing, MOST will be automatically re-enrolled in the same plan.
  • Switch to a different Marketplace plan. If you switch to a new health plan that does not cover your current medications, treatments or doctor, ask for an exception to maintain temporary coverage of them to avoid interruptions in care.   
Decisions should be based on the current law and plans currently available; change can take time.
 
You MUST enroll through Healthcare.gov to receive or maintain a premium tax credit. Check your eligibility for a premium subsidy and more at healthcare.gov , or call 800-318-2596.
 
Read more about the Marketplace or contact an MS Navigator at 1-800-344-4867 (regular business hours) or online.
 
Medicare Part D and Medicare Advantage open enrollment is October 15 to December 7 for coverage that begins January 1, 2018
 
During this open enrollment time, you can:
  • Enroll in a Part D (prescription drug coverage) or Advantage plan for the first time
  • Switch to a different Part D plan
  • Switch from a Medicare Advantage plan to original Medicare
Check your eligibility for a low-income subsidy, Medicare Savings Program or Special Enrollment periods.

Read more about Medicare or contact an MS Navigator at 1-800-344-4867 (regular business hours) or online.

Insured by an Employer Plan




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Tuesday, October 31, 2017

Patient Survey Studies Find Multiple Sclerosis Relapse is Underreported; Approximately Half of Patients Do Not Always Engage with Healthcare Practitioners During Relapse

-- Mallinckrodt-Sponsored Survey Findings Presented at 7th Joint ECTRIMS-ACTRIMS Meeting (MSParis2017) --
STAINES-UPON-THAMES, United KingdomOct. 27, 2017 /PRNewswire/ -- Mallinckrodt plc (NYSE: MNK), a leading global specialty pharmaceutical company, today announced results from two company-sponsored surveys – the Multiple Sclerosis in America 2017 Survey (Poster P805) and a national patient survey conducted by Harris Poll (Poster P1267) – that suggest patient-reported multiple sclerosis (MS) relapse rates may be higher than often thought. The surveys found that approximately one in every two patients experiencing a relapse do not always report it to their healthcare provider (HCP). The findings are being presented at MSParis2017, the 7th Joint ECTRIMS-ACTRIMS Meeting, from October 25-28, in Paris, France.
"The surveys provide valuable patient insights that underscore the need for further education about MS relapse and its treatment," said Tunde Otulana, MD, Chief Medical Officer at Mallinckrodt. "Increased engagement and timely follow-up during and after relapse should be prioritized to enhance patient satisfaction with their treatment plan."
"Relapse Prevalence, Symptoms, and Health Care Engagement: Insights from Patients with Multiple Sclerosis from the Multiple Sclerosis in America 2017 Survey" [Poster P805] includes data of 5,311 patients with MS on the prevalence and characterization of MS relapse and HCP engagement during and after relapse. The annual survey was fielded online in the first quarter of 2017 by Health Union, LLC, a company that cultivates online communities for people with chronic health conditions, including MS. All participants were required to have been diagnosed with MS and to live in the U.S.
Key Findings
  • 72.2% reported having relapsing-remitting MS; 12.1% reported having secondary-progressive MS; 9.3% reported having primary-progressive MS; and 6.5% were unsure how to characterize their MS.
    • Roughly three-quarters (74.8%) of respondents with a relapsing form of MS reported current use of disease-modifying therapies (DMTs).
  • 73.1% of respondents reported experiencing at least one relapse in the past two years.
    • Annualized relapse rates amongst all respondents were: <1 per year (44.1%), 1-2 per year (35.5%), and >2 per year (20.2%).
  • 46.9% of respondents with relapses said they always or often contact their HCP during a relapse; 45.8% said they sometimes or rarely contact their HCP during a relapse; and 7.3% said they never contact their HCP during a relapse.
  • Common reasons for patients not engaging their HCP during a relapse were: relapse is not severe enough (57.9%), HCP is unhelpful or didn't tell me I should (30.9%), medications are ineffective or not well tolerated (25.6%), preference to manage alone (24.4%), financial or insurance barriers (16.1%), or had medication on-hand (10.0%).
  • More frequent patient engagement of an HCP during a relapse was associated with lower relapse frequency.
  • In addition, patients were more satisfied with both their provider and their overall treatment plan when HCP follow-up occurred within one month of reporting of the relapse (both p<0.001).
Poster P805 Limitations
  • Surveys reflect convenience samples, and are subject to participation bias and recall bias. Respondents may be different and non-generalizable to the MS adult population.
  • Relapse was recalled over a two-year period. Relapses are more likely to occur over longer timeframes, so recoded one-year rates may be elevated.
  • Validated scales/measures were not used throughout the survey; measurement properties were not formally assessed prior to use, leading to a potential lack of clear interpretability. Such challenges in conducting voice of patient research are not uncommon.
"Understanding Patient Underreporting of MS Relapses: Insights from a 2017 Survey of Patients with Multiple Sclerosis" [Poster P1267] highlights results from a survey of 250 adults (at least 18 years of age) with MS who had a relapse within the past three years. The survey, conducted online by Harris Poll on behalf of Mallinckrodt between March 14, 2017 and April 4, 2017, sought to determine the percentage of MS patients who do not consistently report symptoms of relapse to their physicians, as well as their reasons for underreporting.
Key Findings
  • While most patients (91%) believe it is at least as important (if not more important) to treat relapses as their MS, half (51%) said they do not always contact their physician when they suspect they are experiencing a relapse.
    • A majority of those who do not always report their suspected relapses cited their reason for not doing so as believing the relapse would resolve on its own and didn't need to be treated (67%).
  • Regardless of their relapse-reporting behavior, patients had a similar understanding of the common indicators of a relapse.
  • Patients who always reported suspected relapses were more likely versus those who did not to:
    • strongly agree that their doctor has spent time educating them about the signs and symptoms that could indicate a relapse (54% vs. 24%);
    • state that it is very important to monitor for signs and symptoms of a relapse (83% vs. 51%), report symptoms regardless of severity (83% vs. 51%), and seek treatment for their relapse (80% vs. 48%); and
    • be very satisfied with prior steroid therapy (39% vs. 17%) and be willing to be treated again with IV steroids (94% vs. 65%).
The posters with additional study details are available on the Mallinckrodt website.




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