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MS research update - Does benign MS stay benign MS? - 22 May 2017

Summary

Canadian researchers wanted to see if people considered to have benign MS (where people have very mild relapses and low levels of disability some years after diagnosis) would still meet this definition ten years later. They were also interested to know if it was possible to predict those people who were destined to have a benign course of MS as this would help identify people who might not need to take one of the disease modifying drugs.

Using records for more than 5000 patients held in the Ottawa Hospital MS clinic database, researchers identified 175 people with EDSS 3 or less 10 years from the onset of MS who had been assessed in clinic at 10 and 20 years.

Of 175 people with EDSS 3 or less at 10 years, 66.3% remained benign at 20 years. The remainder had progressed and were no longer benign. Reducing the cutoff for benign MS to EDSS 2 or less at 10 years, 71.9% remained benign at 20 years. Further redefining benign MS to EDSS 1 or less at 10 years, 81.6% remained benign at 20 years.

The researchers were unable to identify any early clinical indicators which could accurately predict future benign course.

The researchers concluded that setting a cutoff of EDSS 3 at 10 years does not reliably predict those who will remain benign at 20 years; nearly 4 out of 10 people in this study went on to have a more progressive course of MS. A better definition of benign MS requires stricter EDSS cutoffs at 10 years (2 or less, or 1 or less). Selecting benign MS based on EDSS at 15 years rather than 10 years also gives a more accurate long term prediction.

Since none of the early clinical indicators could predict future course, they concluded that benign MS can only be used to describe someone's past experience of MS. They consider that delaying disease modifying drugs (DMDs) in the hope of someone having and maintaining a benign status is risky, particularly as once it is clear that someone is no longer benign, they may have progressed to the point where DMDs are no longer effective.


Background

The term "benign MS" is sometimes used to describe a course of MS where people continue to have low levels of disability some years after diagnosis. Exact definitions vary, but the most common is an EDSS score of 3 or less 10 years after the first signs of MS. Since the definition is the long term absence of symptoms, benign MS can only be diagnosed with hindsight.

The use of the term has become controversial with some neurologists questioning whether benign MS really exists. People who meet the criteria for having benign MS will often say that it certainly feels anything but benign.

How this study was carried out

Using records for more than 5000 patients held in the Ottawa Hospital MS clinic database, researchers identified 175 people with EDSS 3 or less 10 years from the onset of MS who had been assessed in clinic at 10 and 20 years.

What was found

Of these 175 people defined as having benign MS, 66.3% remained benign at 20 years. The remainder had progressed and were no longer benign. By reducing the cutoff for benign MS to EDSS 2 or less at 10 years, 71.9% remained benign at 20 years. Further redefining benign MS to EDSS 1 or less at 10 years, 81.6% remained benign at 20 years.

The researchers were unable to identify any early clinical indicators which could accurately predict future benign course.

What does it mean?

Setting a cutoff of EDSS 3 at 10 years did not reliably predict those who would remain benign at 20 years; nearly 4 out of 10 people went on to have a more progressive course of MS.

The researchers conclude that a better definition of benign MS requires stricter EDSS cutoffs at 10 years (2 or less, or 1 or less). Selecting benign MS based on EDSS at 15 years rather than 10 years also gave a more accurate long term prediction.

Since none of the early clinical indicators could predict future course, they concluded that benign MS can still only be decided in retrospect. They consider that delaying disease modifying drugs (DMDs) in the hope of someone having and maintaining a benign status is risky, particularly as once it is clear that someone is no longer benign, they may have progressed to the point where DMDs are no longer effective.

The researchers recognised several problems with the methods they used. Firstly, using EDSS to measure MS tends to focus on mobility and overlooks cognitive problems; studies of people considered to have benign MS have shown that some people with apparently benign MS do have problems with issues such as memory, concentration and planning. Incorporating cognitive assessments into the definition of benign MS would more accurately identify those people who are mildly affected by MS.

Secondly, it is likely that the selection method missed people with a truly benign course of MS. The study selected medical records for people who had been assessed in clinics at both 10 years and 20 years after onset of MS symptoms. It is quite likely that people with truly benign MS might have felt there was no need to attend clinics at one or both of these time points so they would not have been included in the study set. A prospective study, one which takes a group of people and follows them over the years, is considered more reliable than a retrospective study such as this one which looks back at data collected previously for different purposes.

Sartori A, et al
Can we predict benign multiple sclerosis? Results of a 20-year long-term follow-up study
Journal of Neurology 2017; 264:1068-1075
Abstract

More about benign MS and EDSS

Exact definitions for benign MS vary, but the most common definition of benign MS is an EDSS (Expanded Disability Status Scale) score of 3 or less, 10 years after the first signs of MS.

An EDSS score of 3 is associated with moderate problems with one symptom or mild problems with several with walking unaffected. Since the defining characteristic of benign MS is the long-term absence of symptoms, it can only be diagnosed retrospectively after ten or more years. The term should be used with caution and can only describe someone's past experience of MS.

EDSS - Expanded Disability Status Scale - is the tool that neurologists and other health professionals use to measure disability in people with MS and monitor changes over time. It is widely used in clinical trials and for annual assessments of people with MS.

The EDSS scale ranges from 0 to 10 in 0.5 unit increments that represent higher levels of disability. Scoring is based on an examination by a neurologist.

EDSS steps 1.0 to 4.5 refer to people with MS who are able to walk without any aid and is based on measures of problems with weakness, co-ordination, speech and swallowing, numbness, bowel and bladder function and eyesight. EDSS steps 5.0 to 9.5 are defined by impairment to walking.

EDSS is sometimes criticised for a number of reasons. Firstly, because people’s MS symptoms vary from day to day, they may get an EDSS score reflecting how they were at the time when they were assessed – which may or may not be typical.

EDSS also measures disability primarily by the mobility of the person with MS. For example, EDSS 4 is defined as someone able to walk 500m without aid or rest, while at EDSS 6 they require a walking aid, such as a cane or crutch to walk about 100m, with or without resting. Some neurologists have noted that this doesn’t measure how MS affects upper limb mobility, for example.

If you want to know more about your EDSS score and what it means for you, speak to your neurologist or MS nurse. You can also try working out your EDSS for yourself by using the online EDSS calculator developed by the MS Team at Barts Hospital in London.

Research by topic areas...

Causes of MS

Nielsen NM, Harpsøe M, Simonsen J, et al.
Age at Menarche and Risk of Multiple Sclerosis: A Prospective Cohort Study Based on the Danish National Birth Cohort.
Am J Epidemiol. 2017 Apr 15;185(8):712-719.
abstract

Co-existing conditions

Marrie RA, Patten SB, Tremlett H, et al.
Increased incidence and prevalence of psoriasis in multiple sclerosis.
Mult Scler Relat Disord. 2017 Apr;13:81-86.
abstract
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Thormann A, Magyari M, Koch-Henriksen N, et al.
Vascular comorbidities in multiple sclerosis: a nationwide study from Denmark.
J Neurol. 2016 Dec;263(12):2484-2493. Epub 2016 Oct 3.
abstract

Jun-O'Connell AH, Butala A, Morales IB, et al.
The Prevalence of Bipolar Disorders and Association With Quality of Life in a Cohort of Patients With Multiple Sclerosis.
J Neuropsychiatry Clin Neurosci. 2017 Winter;29(1):45-51.
abstract

Diagnosis

Wijnands JMA, Kingwell E, Zhu F, et al.
Health-care use before a first demyelinating event suggestive of a multiple sclerosis prodrome: a matched cohort study.
Lancet Neurol. 2017 Jun;16(6):445-451.
abstract

Solomon AJ, Bourdette DN, Cross AH, et al.
The contemporary spectrum of multiple sclerosis misdiagnosis: A multicenter study.
Neurology. 2016 Sep 27;87(13):1393-9.
abstract

Disease modifying drugs

Fragoso YD.
Multiple sclerosis treatment with fingolimod: profile of non-cardiologic adverse events.
Acta Neurol Belg. 2017 May 20. [Epub ahead of print]
abstract

van Kempen ZL, Leurs CE, Witte BI, et al.
The majority of natalizumab-treated MS patients have high natalizumab concentrations at time of re-dosing.
Mult Scler. 2017 May 1:1352458517708464. [Epub ahead of print]
abstract
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Newsome SD, Kieseier BC, Liu S, et al.
Peginterferon beta-1a reduces disability worsening in relapsing-remitting multiple sclerosis: 2-year results from ADVANCE.
Ther Adv Neurol Disord. 2017 Jan;10(1):41-50.
abstract
Read the full text of this paper

Filippini G, Del Giovane C, Clerico M, et al.
Treatment with disease-modifying drugs for people with a first clinical attack suggestive of multiple sclerosis.
Cochrane Database Syst Rev. 2017 Apr 25;4:CD012200.
abstract
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Heesen C, Kleiter I, Meuth SG, et al.
Benefit-risk perception of natalizumab therapy in neurologists and a large cohort of multiple sclerosis patients.
J Neurol Sci. 2017 May 15;376:181-190.
abstract

Merkel B, Butzkueven H, Traboulsee AL, et al.
Timing of high-efficacy therapy in relapsing-remitting multiple sclerosis: A systematic review.
Autoimmun Rev. 2017 Jun;16(6):658-665.
abstract

Krämer J, Tenberge JG, Kleiter I, et al.
Is the risk of progressive multifocal leukoencephalopathy the real reason for natalizumab discontinuation in patients with multiple sclerosis?
PLoS One. 2017 Apr 13;12(4):e0174858.
abstract
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Giovannoni G, Tomic D, Bright JR, et al.
"No evident disease activity": The use of combined assessments in the management of patients with multiple sclerosis.
Mult Scler. 2017 Apr 1:1352458517703193. [Epub ahead of print]
abstract
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Holmøy T, von der Lippe H, Leegaard TM.
Listeria monocytogenes infection associated with alemtuzumab - - a case for better preventive strategies.
BMC Neurol. 2017 Apr 4;17(1):65.
abstract
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Giovannoni G, Cohen JA, Coles AJ, et al.
Alemtuzumab improves preexisting disability in active relapsing-remitting MS patients.
Neurology. 2016 Nov 8;87(19):1985-1992. Epub 2016 Oct 12.
abstract
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Kappos L, Edan G, Freedman MS, et al.
The 11-year long-term follow-up study from the randomized BENEFIT CIS trial.
Neurology. 2016 Sep 6;87(10):978-87.
abstract
Read the full text of this paper

Newsome SD, Kieseier BC, Arnold DL, et al.
Subgroup and sensitivity analyses of annualized relapse rate over 2 years in the ADVANCE trial of peginterferon beta-1a in patients with relapsing-remitting multiple sclerosis.
J Neurol. 2016 Sep;263(9):1778-87.
abstract
Read the full text of this paper

Iaffaldano P, Viterbo RG, Trojano M.
Natalizumab discontinuation is associated with a rebound of cognitive impairment in multiple sclerosis patients.
J Neurol. 2016 Aug;263(8):1620-5.
abstract

Ziemssen T, Derfuss T, de Stefano N, et al.
Optimizing treatment success in multiple sclerosis.
J Neurol. 2016 Jun;263(6):1053-65.
abstract
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Benedict RH, Cohan S, Lynch SG, et al.
Improved cognitive outcomes in patients with relapsing-remitting multiple sclerosis treated with daclizumab beta: Results from the DECIDE study.
Mult Scler. 2017 May 1:1352458517707345. [Epub ahead of print]
abstract
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Drugs in development

Nandoskar A, Raffel J, Scalfari AS, et al.
Pharmacological Approaches to the Management of Secondary Progressive Multiple Sclerosis.
Drugs. 2017 May;77(8):885-910.
abstract

Salzer J, Svenningsson R, Alping P, et al.
Rituximab in multiple sclerosis: A retrospective observational study on safety and efficacy.
Neurology. 2016 Nov 15;87(20):2074-2081. Epub 2016 Oct 19.
abstract
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Epidemiology

Salter A, Thomas NP, Tyry T, et al.
A contemporary profile of primary progressive multiple sclerosis participants from the NARCOMS Registry.
Mult Scler. 2017 May 1:1352458517711274. [Epub ahead of print]
abstract

Families

Moberg JY, Larsen D, Brødsgaard A.
Striving for balance between caring and restraint: young adults' experiences with parental multiple sclerosis.
J Clin Nurs. 2017 May;26(9-10):1363-1374.
abstract

Gender

Lavorgna L, Moccia M, Russo A, et al.
Health-care disparities stemming from sexual orientation of Italian patients with Multiple Sclerosis: A cross-sectional web-based study.
Mult Scler Relat Disord. 2017 Apr;13:28-32.
abstract

Bove R, McHenry A, Hellwig K, et al.
Multiple sclerosis in men: management considerations.
J Neurol. 2016 Jul;263(7):1263-73.
abstract

Hormones and MS

Bove R, White CC, Fitzgerald KC, et al.
Hormone therapy use and physical quality of life in postmenopausal women with multiple sclerosis.
Neurology. 2016 Oct 4;87(14):1457-1463. Epub 2016 Sep 7.
abstract

Other treatments

Taylor E, Taylor-Piliae RE.
The effects of Tai Chi on physical and psychosocial function among persons with multiple sclerosis: A systematic review.
Complement Ther Med. 2017 Apr;31:100-108.
abstract

Springer S, Khamis S.
Effects of functional electrical stimulation on gait in people with multiple sclerosis - A systematic review.
Mult Scler Relat Disord. 2017 Apr;13:4-12.
abstract

Lee JE, Bisht B, Hall MJ, et al.
A Multimodal, Nonpharmacologic Intervention Improves Mood and Cognitive Function in People with Multiple Sclerosis.
J Am Coll Nutr. 2017 Mar-Apr;36(3):150-168.
abstract

Yang F, Estrada EF, Sanchez MC.
Vibration training improves disability status in multiple sclerosis: A pretest-posttest pilot study.
J Neurol Sci. 2016 Oct 15;369:96-101.
abstract

Paediatric MS

Iaffaldano P, Simone M, Lucisano G, et al.
Prognostic indicators in pediatric clinically isolated syndrome.
Ann Neurol. 2017 May;81(5):729-739.
abstract

Stennett A, De Souza L, Norris M.
Physical activity and exercise priorities in community dwelling people with multiple sclerosis: a Delphi study.
Disabil Rehabil. 2017 Apr 10:1-8. [Epub ahead of print]
abstract
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Yeh EA, Grover SA, Powell VE, et al.
Impact of an electronic monitoring device and behavioral feedback on adherence to multiple sclerosis therapies in youth: results of a randomized trial.
Qual Life Res. 2017 Apr 9. [Epub ahead of print]
abstract

Alroughani R, Ahmed SF, Behbehani R, et al.
The Use of Natalizumab in Pediatric Patients With Active Relapsing Multiple Sclerosis: A Prospective Study.
Pediatr Neurol. 2017 May;70:56-60.
abstract

Gianfrancesco MA, Stridh P, Rhead B, et al.
Evidence for a causal relationship between low vitamin D, high BMI, and pediatric-onset MS.
Neurology. 2017 Apr 25;88(17):1623-1629.
abstract

Nourbakhsh B, Graves J, Casper TC, et al.
Dietary salt intake and time to relapse in paediatric multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2016 Dec;87(12):1350-1353.
abstract

Physical activity

Tallner A, Streber R, Hentschke C, et al.
Internet-Supported Physical Exercise Training for Persons with Multiple Sclerosis-A Randomised, Controlled Study.
Int J Mol Sci. 2016 Sep 30;17(10). pii: E1667.
abstract
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Prognosis

Tanasescu R, Constantinescu CS, Tench CR, et al.
Smoking cessation and the reduction of disability progression in Multiple Sclerosis: a cohort study.
Nicotine Tob Res. 2017 Apr 10. [Epub ahead of print]
abstract

Lunde HMB, Assmus J, Myhr KM, et al.
Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study.
J Neurol Neurosurg Psychiatry. 2017 Apr 1. pii: jnnp-2016-315238. [Epub ahead of print]
abstract
Read the full text of this paper

Plantone D, De Angelis F, Doshi A, et al.
Secondary Progressive Multiple Sclerosis: Definition and Measurement.
CNS Drugs. 2016 Jun;30(6):517-26.
abstract

Provision of care

Dean E.
The MS Nurse: 25 Years on.
Nurs Stand. 2017 Apr 26;31(35):18-20.
abstract

Solari A, Giordano A, Patti F, et al.
Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.
Mult Scler. 2017 Apr 1:1352458517704078. [Epub ahead of print]
abstract
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Psychological aspects

Simpson R, Mair FS, Mercer SW.
Mindfulness-based stress reduction for people with multiple sclerosis - a feasibility randomised controlled trial.
BMC Neurol. 2017 May 16;17(1):94.
abstract
Read the full text of this paper

Willson CL, Tetley J, Lloyd C, et al.
The impact of multiple sclerosis on the identity of mothers in Italy.
Disabil Rehabil. 2017 Mar 30:1-12. [Epub ahead of print]
abstract

Borghi M, Bonino S, Graziano F, et al.
Exploring change in a group-based psychological intervention for multiple sclerosis patients.
Disabil Rehabil. 2017 Mar 30:1-8. [Epub ahead of print]
abstract

Cotter J, Firth J, Enzinger C, et al.
Social cognition in multiple sclerosis: A systematic review and meta-analysis.
Neurology. 2016 Oct 18;87(16):1727-1736. Epub 2016 Sep 21. Review.
abstract
Read the full text of this paper

Messmer Uccelli M, Traversa S, Ponzio M.
A survey study comparing young adults with MS and healthy controls on self-esteem, self-efficacy, mood and quality of life.
J Neurol Sci. 2016 Sep 15;368:369-73.
abstract

Relapses

Lattanzi S, Cagnetti C, Danni M, et al.
Oral and intravenous steroids for multiple sclerosis relapse: a systematic review and meta-analysis.
J Neurol. 2017 May 10. [Epub ahead of print]
abstract

Self-management

Frost J, Grose J, Britten N.
A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis.
Health (London). 2017 May;21(3):316-336.
abstract

Stem cells

Ruiz-Argüelles GJ, León-Peña AA, León-González M, et al.
A Feasibility Study of the Full Outpatient Conduction of Hematopoietic Transplants in Persons with Multiple Sclerosis Employing Autologous Non-Cryopreserved Peripheral Blood Stem Cells.
Acta Haematol. 2017 May 18;137(4):214-219. [Epub ahead of print]
abstract

Sormani MP, Muraro PA, Schiavetti I, et al.
Autologous hematopoietic stem cell transplantation in multiple sclerosis: A meta-analysis.
Neurology. 2017 May 30;88(22):2115-2122.
abstract

Sarkar P, Rice CM, Scolding NJ.
Cell Therapy for Multiple Sclerosis.
CNS Drugs. 2017 Apr 10. [Epub ahead of print]
abstract

Casanova B, Jarque I, Gascón F, et al.
Autologous hematopoietic stem cell transplantation in relapsing-remitting multiple sclerosis: comparison with secondary progressive multiple sclerosis.
Neurol Sci. 2017 Apr 10. [Epub ahead of print]
abstract
Read the full text of this paper

Cohen JA, Imrey PB, Planchon SM, et al.
Pilot trial of intravenous autologous culture-expanded mesenchymal stem cell transplantation in multiple sclerosis.
Mult Scler. 2017 Apr 1:1352458517703802. [Epub ahead of print]
abstract

Symptoms and symptom management

Gerstenecker A, Myers T, Lowry K, et al.
Financial Capacity and its Cognitive Predictors in Progressive Multiple Sclerosis.
Arch Clin Neuropsychol. 2017 May 13:1-8. [Epub ahead of print]
abstract

Charvet LE, Yang J, Shaw MT, et al.
Cognitive function in multiple sclerosis improves with telerehabilitation: Results from a randomized controlled trial.
PLoS One. 2017 May 11;12(5):e0177177.
abstract
Read the full text of this paper

Klein OA, Drummond A, Mhizha-Murira JR, et al.
Effectiveness of cognitive rehabilitation for people with multiple sclerosis: a meta-synthesis of patient perspectives.
Neuropsychol Rehabil. 2017 May 1:1-22. [Epub ahead of print]
abstract

Aharony SM, Lam O, Corcos J.
Evaluation of lower urinary tract symptoms in multiple sclerosis patients: Review of the literature and current guidelines.
Can Urol Assoc J. 2017 Jan-Feb;11(1-2):61-64.
abstract
Read the full text of this paper

Skierlo S, Rommer PS, Zettl UK.
Symptomatic treatment in multiple sclerosis-interim analysis of a nationwide registry.
Acta Neurol Scand. 2017 Apr;135(4):394-399.
abstract

Kuusisto H, Vahvelainen T, Hämäläinen P, et al.
Asymptomatic subjects differ less from their twin siblings with MS than from healthy controls in cognitive functioning. A Finnish Twin Cohort study.
J Neurol Sci. 2016 Jun 15;365:50-3.
abstract

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