Patient questionnaires can be sensitive to signs of disease progression and worsening in neurological disorders like multiple sclerosis just as they are in other diseases, helping doctors to better predict clinical outcomes in patients, a study reports. Particularly, the study found that MS patients with higher scores on a specific disease questionnaire were nearly six times more likely to die within 10 years than those with lower scores, and that mortality risk also jumped among people whose scores rose on a second taking of same questionnaire. But the researchers cautioned that their study was not a tool for predicting mortality but a way to help patients be more active participants in their care. “Our research shows that by answering a set series of questions, patients can have an important role in predicting long-term prognosis in diseases like MS, and that these types of questionnaire should be used by doctors to get a better idea of the patient’s health,” Joel Raffel, study’s first author, from the Imperial College London, United Kingdom, said in a university news release written by Ryan O'Hare. “We hope that using patient-reported outcomes like these more and more will mean a shift towards empowering patients," he added. "They will be able to provide their own data, so rather than the doctor telling the patient how they are doing, it’s the other way around.” Among tools often used in the clinic are patient-reported outcomes; that is, questionnaires for patients that focus on their disease and treatment. But while these questionnaires have many uses, from screening for symptoms or evaluating treatment response to improving communications, they are often under-utilized when people have MS or other neurological diseases, "in part because it is not clear if PROs [patient-reported outcomes] relate to ‘hard clinical outcomes’ like disability or mortality," the team noted. Researchers wanted to determine whether the Multiple Sclerosis Impact Scale–29 (MSIS-29) — a 29-question survey assessing quality of life and disease impact over the previous two weeks — might serve as a way of predicting a patient's risk of death. The questionnaire was completed by 2,126 people, registered with the MS Society Tissue Bank in the U.K., beginning in 2004. Of these, 872 patients repeated it one year later. By 2014, the researchers reported that 264 of the original group of MS patients (12.4%) had died, and an evaluation revealed that MSIS-29 scores were associated with 10-year mortality risk regardless of age, gender, and disability score at the time the questionnaire was completed. Indeed, patients with high scores on the MSIS-29 questionnaire, indicative of a poor quality of life, were 5.7 times more likely to die within 10 years than those whose scores were lower. The mortality risk rose further among people whose MSIS-29 score worsened between the first and second year of answering the questionnaire. “Ideally, these questionnaires should be administered routinely, once a year in the clinic or online,” Raffel said. “This could help doctors to understand what issues the patients are facing and could also help to answer big research questions around prognosis and which of the available treatments we have for MS are working.” The team believes that questionnaire responses, together with usual clinical assessment tools like imaging data through MRI scans, could help doctors and patients choose the best course of treatment.
disease progression
Genentech shared new insights into the workings of Ocrevus (ocrelizumab) and its effectiveness in reducing disease activity and slowing progression in relapsing and primary progressive multiple sclerosis (MS) at the recent 3rd Congress of the European Academy of Neurology (EAN). The new findings, previously reported here, built on analyses of information gathered during the three Phase 3 clinical trials assessing Ocrevus' safety and efficacy, as well as through monitoring patients in extension studies. The studies showed that nearly 40 percent of Ocrevus-treated relapsing patients and nearly 30 percent of primary progressive patients achieved NEPAD during the Phase 3 trials. In contrast, only 21.5 percent of those treated with Rebif and 9.4 percent receiving placebo achieved NEPAD — figures that demonstrate Ocrevus’ impact on patients’ lives, as well as Ocrevus’ ability to slow the decline in walking ability and other types of disabilities are comparable between patients with relapsing and primary progressive disease — data that demonstrate that the treatment acts on disease mechanisms that drive disability in both disease forms. How these effects play out in the long-term is the subject of ongoing research, as Genentech continues to follow these patients in an extension study. In addition, Ocrevus' prescription label strongly advises against pregnancy while on the treatment. Despite precautions, some women became pregnant during the trials. One of the meeting presentations narrated outcomes of these pregnancies; one healthy baby born at term and two ongoing pregnancies in women exposed to the drug. But while Genentech monitors women who become pregnant while on Ocrevus, the number of reported pregnancies is too small to draw conclusions about the treatment’s safety in pregnancy, and researchers do not know if Ocrevus also depletes B-cells in the fetus or in the baby born to a treated woman.
The over-the-counter antioxidant lipoic acid slowed brain deterioration in patients with secondary progressive multiple sclerosis (SPMS), according to a pilot study. An Oregon Health & Science University research team conducted the study, “Lipoic acid in secondary progressive MS.” It was published in the journal Neuroimmunology and Neuroinflammation. A hallmark…
During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?” Interestingly, within a few days of my exam, a Harvard Med School study was…
Ocrevus (ocrelizumab) significantly reduces disease activity and disability progression in patients with relapsing multiple sclerosis (MS) and primary progressive MS (PPMS), according to results of post-hoc analyses of Genentech’s Phase 3 clinical trial program assessing the drug.
Fatigue and limited leg function are more common among older people with progressive multiple sclerosis than in those with relapsing forms of the disease, according to a study. In fact, they are a sign that the disease of a person with relapsing MS is becoming worse by reaching the progressive MS…
Cigarette smoking is certainly no good for you, but it may not necessarily make your primary progressive multiple sclerosis (PPMS) worse, a new study finds. The study, “Smoking does not influence disability accumulation in primary progressive multiple sclerosis,” appeared in the European Journal of Neurology. It contradicts what was…
Patients with secondary progressive multiple sclerosis (SPMS) have a higher burden of illness than patients with relapsing-remitting multiple sclerosis, a new study showed. The study, “Characteristics, burden of illness, and physical functioning of patients with relapsing-remitting and secondary progressive multiple sclerosis: a cross-sectional US survey,” appeared in…
A common acne medicine called minocycline can reduce the rate of multiple sclerosis progression in patients who are at early stages of the disease, according to a Phase 3 clinical trial. The finding was from the MinoCIS trial (NCT00666887) of minocycline, which goes by the brand name Mynocan and other…
MS brain inflammation is a result of interactions between processes in the brain and the rest of the body, with interferon-gamma (IFN-gamma) being a key player, according to a detailed analysis of cytokines in the spinal fluid and serum of MS patients. Russia’s Kazan Federal University found that IFN-gamma activates other…
I’ve been taking a statin drug for years to keep my cholesterol low, and it’s doing a really good job. Now, there’s hope that this class of drug also might be useful for MS patients. A major trial in the U.K. is testing the drug simvastatin (used to control…
Laquinimod failed to meet its primary Phase 3 clinical trial objective of slowing the progression of relapsing-remitting multiple sclerosis (RRMS) after three months, according to its developers, Teva Pharmaceutical Industries and Active Biotech. That has prompted the partners to abandon their quest to use the therapy to treat RRMS. Laquinimod…
A global Phase 3 clinical trial assessing MD1003 — also known as high-dose biotin — for progressive multiple sclerosis (MS) might lead to the approval of one of the first treatments helping select progressive patients to improve. The trial aims to prove that high-dose biotin can reverse disability in non-active progressive MS.
Cladribine tablets reduce the risk of disability progression and relapse in patients with relapsing multiple sclerosis (MS), the CLARITY clinical trial indicates. The treatment was also well-tolerated and had a good safety profile, according to a presentation at the Annual Meeting of the American Academy of Neurology (AAN) in Boston,…
A cytomegalovirus infection triggers an increase in inflammatory and cytotoxic immune cells in mice with multiple sclerosis (MS), which leads to enhanced inflammation and loss of nerve-protecting myelin. The study, “Cytomegalovirus infection exacerbates autoimmune mediated neuroinflammation,” was published in the journal Scientific Reports. A cytomegalovirus (CMV) infection…
Siponimod slows the progression of multiple sclerosis patients’ disability, a Phase 3 clinical trial indicates. The therapy reduced the risk of disability progression in patients with secondary progressive multiple sclerosis (SPMS) by 21 percent over three months, researchers said. At six months, the reduction was 26 percent, they said. Researchers…
Patients with multiple sclerosis (MS) may be developing the disease for up to five years before the first clinical diagnosis is made, a study has found. The study, “Health-care use before a first demyelinating event suggestive of a multiple sclerosis prodrome: a matched cohort study,” was published…
Real-world Data of Gilenya Treatment Validates Slowed Brain Shrinkage as Disease Progression Measure
A real-world study of Gilenya (fingolimod) in relapsing multiple sclerosis (MS) confirms benefits of the treatment seen in clinical trials. The Novartis-sponsored study also demonstrated that measures of brain shrinkage can be used in a clinical setting to evaluate disease progression. The data, presented at the American Academy of…
A 60-year longitudinal multiple sclerosis (MS) study in a Norwegian cohort analyzing life expectancy, survival and mortality concluded that MS patients live shorter lives and have higher mortality than the general population. The report, “Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study,”…
Multiple sclerosis is a very complex disease that attacks the central nervous system. The symptoms MS generates are random, affect everyone differently, and are categorized either as primary MS, or secondary MS, symptoms. Primary MS symptoms are the direct result of the disease itself — byproducts of the damaged…
Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Canada, World’s Multiple Sclerosis Capital, Launches 3-Way Collaboration to Research MS Progression Why some people develop primary progressive MS and others have the relapsing type, and why a many relapsing patients develop secondary…
Canada, World’s Multiple Sclerosis Capital, Launches 3-Way Collaboration to Research MS Progression
Three Canadian entities — Toronto-based Biogen Canada and the MS Society of Canada, and Montreal-based Brain Canada — have jointly invited researchers to establish a multiple sclerosis (MS) progression cohort in Canada. The $7 million nationwide MS Progression Cohort offers a timely opportunity to investigate some of the biggest challenges in curing progressive MS, such as…
High levels of a protein called Rab32 may contribute to the progression of multiple sclerosis (MS), leading to neuronal loss, a new study concludes. The study, “Rab32 connects ER stress to mitochondrial defects in multiple sclerosis,” appeared in the Journal of Neuroinflammation. The endoplasmic reticulum (ER) is involved in the production…
An extension of a Phase 3 clinical trial has shown that early treatment with Rebif (interferon beta-1a) in patients with initial manifestations of multiple sclerosis (MS) can prolong the time to a clinically definite multiple sclerosis (CDMS) diagnosis over five years. The study, “Subcutaneous interferon β-1a in…
Benign MS: Is It Real or a Myth?
What is benign MS? Does it even exist? Certainly it is not one of the types of the disease often listed as making up the multiple sclerosis family. It is a term that is surrounded by controversy,…
A 60-year follow-up study of nearly 1,400 Norwegian patients with multiple sclerosis (MS) analyzed their survival and risk of dying starting with the onset of the disease through its progression. The study, “A 60- year follow-up on survival and cause of death in multiple sclerosis in Western Norway,” was recently…
Spending more time in the sunshine could make people with multiple sclerosis (MS) feel more energetic, though dietary vitamin D intake’s effect is mixed, depending on what type of MS a particular patient has. That’s the conclusion of a study — “Dietary intakes of vitamin D, sunshine exposure, EDSS and fatigue…
Lately, I have been reading more and more about the potential connection between the blood brain barrier and multiple sclerosis. I have been researching the blood brain barrier (BBB) to better understand it and share my findings with readers. The BBB is a network of endothelial cells…
Scientists have discovered the first blood biomarker for multiple sclerosis (MS) – a chemical identifier in the blood. The discovery should lead to a simple blood test that makes it quicker and easier to follow the course of MS, a debilitating disease of the central nervous system affecting around 2.3 million people…
Many multiple sclerosis (MS) patients have a reduced sense of smell, and the more relapses they have, the worse the problem, according to a study suggesting that smell may be a marker for the disease’s progression. Findings also suggested a connection between reduced sense of taste and MS progression. The…
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