About this guide This short guide is a resource to help people with multiple sclerosis (MS) understand how they can keep their brains as healthy as possible and request the highest possible standard of care from healthcare professionals. It explains how people with MS can put into practice the recommendations from the report Brain health: time matters in multiple sclerosis. This guide and the report were authored by an international group of people with insight into the reality of living with MS. The group included people with MS, representatives from patient organizations, clinicians, researchers, specialist nurses and health economists.
The group recommended a therapeutic strategy that involves: leading a brain-healthy lifestyle, including treating other diseases a plan to monitor MS disease activity to see whether treatment is working informed, shared decision-making urgent referral to a neurologist and prompt diagnosis early treatment with a disease-modifying therapy (DMT), when appropriate understanding the importance of brain health at all stages of the disease.
Although there is currently no cure for MS, our vision is to help people with the disease to take control and take positive action to maximize their lifelong brain health.
What can you do after reading this guide?
Everyone with MS Understand the brain health perspective on MS and embrace a ‘brain-healthy’ lifestyle. Explain to healthcare professionals what matters to you and what you want to achieve with treatment. Ask questions until you feel understood and well informed. Help to monitor your MS by keeping a diary of the things that affect your health and wellbeing, such as symptoms, treatment side effects and other diseases. Be informed about your MS so that you can share the decision-making about your treatment with your healthcare professionals.
People at/very near to diagnosis Ask for urgent referral to a neurologist (preferably one with a special interest in MS) and access to diagnostic services. Start treatment as early as possible with a DMT (if appropriate).
People with relapsing forms of MS Discuss monitoring your MS using magnetic resonance imaging (MRI) brain scans and ask about what the results mean for you. Be confident to discuss the possibility that disease activity may be ongoing even when you are feeling well.
Brain health: a guide for people with multiple sclerosis Positive lifestyle choices can help to keep your brain as healthy as possible Having a healthy brain that functions well is important for people with MS. Here are six positive steps you can take to keep your brain as healthy as possible, whatever your MS diagnosis.
Keep as active as you can Higher levels of aerobic fitness are associated with faster information processing and preserved brain tissue volume. This suggests that being as active as possible may help to preserve brain health in people with MS.
Keep your weight under control Obesity is associated with higher numbers of MS lesions (areas of intensive damage) than maintaining a healthy weight.
Keep your mind active Education, reading, hobbies and artistic or creative pastimes help to protect against cognitive problems in MS when pursued over a lifetime.
Avoid smoking Cigarette smoking is associated with decreased brain volume in people with MS, as well as with higher relapse rates, increased disability progression, more cognitive problems10 and reduced survival compared with not smoking.
Watch how much you drink Unsafe levels of alcohol are associated with reduced survival in people with MS.
Continue taking other medicines that your doctor has prescribed If you have other diseases, be responsible for monitoring and managing them, including taking any prescribed medications. Conditions such as high blood pressure, high cholesterol, heart disease and diabetes can worsen the MS disease course.
What can you do? Embrace a brain-healthy lifestyle that includes keeping physically active, keeping your weight under control, keeping your mind active, not smoking, watching how much you drink and taking any medications prescribed for you. Although it is normal for healthy adults to lose small amounts of brain tissue as they get older, this process happens more quickly in people with MS. Brain health: a guide for people with multiple sclerosis
Regular monitoring should be central to managing MS Monitoring MS to see whether treatment is working is key to maximizing lifelong brain health. Just as a car comes with a plan for regular check-ups and services, the healthcare professionals who oversee your treatment should have a plan to monitor your MS – and to put information about you and your disease into a logbook that they discuss with you. Relapses and disability progression indicate disease activity – and you can take positive action by helping to monitor them. It can be helpful to keep an MS diary of things that affect your health and wellbeing, such as symptoms side effects and other diseases, so that you can share a full picture with your healthcare professionals.
All MS disease activity damages tissue in the brain and spinal cord even if this doesn’t immediately lead to a relapse . There is evidence that lesions (acute areas of damage) and brain tissue loss predict relapses and disability progression. MRI brain scans should therefore be used to look for new lesions. In some clinics it may also be possible to monitor brain tissue loss by using software that is becoming more widely available. Regular monitoring of disease activity can give early warning that MS is not responding well to treatment. Timing is crucial, and clinical or MRI evidence that disease activity is poorly controlled should lead to a discussion about the possibility of switching to a DMT that acts on the body in a different way.
Take Positive Action.
What can you do?
Keep an MS diary of things that affect your health and wellbeing, such as symptoms, side effects and other diseases. Share this information with your healthcare professionals.
Discuss strategies for managing your MS, such as leading a brain-healthy lifestyle and taking a DMT and medications that reduce symptoms.
Ask the healthcare professionals who oversee your treatment how they plan to monitor your MS. Discuss scheduling regular MRI scans to see how active your disease is.
Ensure that you feel well informed about the results of your clinical assessments and MRI scans, and ask those overseeing your treatment to discuss them with you.
Ask whether it is appropriate to switch to another DMT if your MS is not responding well to treatment or if you experience unpleasant side effects.
What can you do? Be part of the decision-making process together with your healthcare professionals.
Explain what matters to you and ask questions until you feel well informed. Prepare for your appointments by making notes about topics you would like to discuss, such as your symptoms, likely disease course and treatment options.
You play a key role in decisions about your treatment
Choosing how to start treatment or when to switch to a different DMT should be an informed, shared decision in which you play an important role. You should feel able to discuss your values, needs, limitations, lifestyle, treatment goals and the likely disease course with your healthcare professionals.
Topics of conversation may include employment, starting or extending a family, other lifestyle factors that are important to you, your attitude to risk and feelings about injections, and any other diseases for which you are being treated, including any side effects of your current medication.
A discussion about the relative convenience, effectiveness, possible side effects and specific safety monitoring of the DMTs being considered is also important. When people with MS feel well informed about their disease and its treatment and have good, open, trust-based relationships with healthcare professionals, they are more likely to continue with treatment – and therefore less likely to experience serious relapses.
A well-informed and proactive collaboration with your healthcare team is therefore an important part of managing your MS successfully.
Explain to your healthcare professionals what matters to you, including your family and home, your job and hobbies, and what you want to achieve with treatment. Look for other resources to help with these conversations. Your local MS patient organizations may be able to help.
Continue to take any DMT that is prescribed. Brain health: a guide for people with multiple sclerosis.
Time matters at/very near to diagnosis
Prompt diagnosis enables early treatment To maximize lifelong brain health, treatment and management of MS need to start as early as possible – and this requires a prompt diagnosis. Generally, a person experiencing symptoms consistent with early MS will seek advice from their family doctor/primary care physician or a hospital. Once the possibility of MS has been recognized, an urgent referral needs to be made to a neurologist – a doctor who specializes in diseases of the nervous system.
MS is a complex disease. A neurologist with a special interest in MS, together with their team, will be best placed to provide a diagnosis and an integrated approach to care and management. Such neurologists have broad experience of the long-term management of MS and in-depth knowledge of the latest diagnostic criteria, treatment options and monitoring processes. MS specialist nurses are key team members in many services. They can help to improve knowledge, confidence and the ability to cope, provide emotional support and are highly valued by people with MS.
It is now possible to diagnose MS earlier than ever before, thanks to evidence from MRI brain scans. Diagnosis now happens at least 10 times more quickly than in the early 1980s,23 and about one in five people who have had a single relapse can receive a firm diagnosis from their first MRI scans. For others, further appointments for MRI scans and clinical examinations will ensure that a diagnosis can be made as soon as possible. A prompt diagnosis means that people with MS and their healthcare professionals can start to treat and manage the disease as early as possible. Early treatment with a DMT can reduce disease activity In people with relapsing forms of MS, starting treatment with a disease-modifying therapy (DMT) early in the disease course is associated with better long-term outcomes than delaying treatment.25 Different DMTs act on the body in different ways and each is associated with a particular set of benefits and possible side effects. Choosing the most appropriate DMT for you is therefore something to talk about with your healthcare professionals, along with how to lead a brain-healthy lifestyle.
What can you do?
Ask for urgent referral to a neurologist if MS is suspected, preferably to one with a special interest in MS, or to an MS specialist clinic.
Request early access to diagnostic procedures, including MRI. Stay in touch with your MS team for ongoing monitoring if you do not receive a diagnosis straight away.
What can you do?
Ask your healthcare professionals whether it is appropriate to start treatment with a DMT and find out which options are available. Brain health: a guide for people with multiple sclerosis Background: the brain health perspective on MS In MS, the body’s immune system mistakenly attacks and damages tissue in the brain, spinal cord and optic nerve (the central nervous system).
Although it is normal for healthy adults to lose small amounts of brain tissue as they get older, this process happens more quickly in people with MS For many people with the disease, this causes physical disability, fatigue and cognitive problems (e.g. difficulties with concentration, memory and learning new things).
MS is most often diagnosed in people aged 20–40 years. The exact range of symptoms experienced by each person can vary, depending on the locations of tissue damage in the central nervous system. In addition, for many people with MS, areas of intensive damage (known as lesions) may noticeably disrupt nerve function and lead to attacks of worsened symptoms and impairment (known as relapses).
All lesions contribute to tissue loss even if they do not cause a relapse. The brain is a remarkably flexible organ. When learning new skills, such as speaking a foreign language or playing a musical instrument, it can recruit new areas to use for these tasks. In a similar way, if a part of the brain has been damaged, new areas can be recruited to help with the tasks previously performed by the damaged area.
Thus, new areas of the brain can be recruited to compensate when MS causes damage to brain tissue. The capacity of the brain to adapt is known as neurological reserve, and the more neurological reserve a brain has the healthier it is. However, it is now known that MS can be active even when someone is feeling well.
Research has shown that only about one in 10 lesions leads to a relapse and that other, less noticeable, damage can also be ongoing. So, even if someone is not experiencing new or worsened symptoms, the brain may be using up some of its neurological reserve to compensate for damage . If all of its neurological reserve is used up, the brain can no longer recruit new areas and the symptoms of MS are more likely to progress.
Neurological reserve is a valuable resource that plays a large part in having a healthy brain that functions well. The earlier sections of this document have explained how you can take positive action to maximize your lifelong brain health whatever your MS diagnosis.
What can you do?
Be aware that MS disease activity may be ongoing even when you feel well and that this can threaten brain health.
Ask your healthcare professionals how they plan to monitor your MS to see whether the disease is active.
Discuss with others, including your healthcare professionals, why neurological reserve and brain health are important. Brain health: a guide for people with multiple sclerosis Figure 2. All MS disease activity leads to brain tissue loss which uses up valuable neurological reserve. a.
MS disease activity causes lesions and other less noticeable damage that lead to faster brain tissue loss than usual. b. All lesions cause tissue loss; if a lesion noticeably disrupts nerve function, it also leads to a relapse (an attack of worsened symptoms and impairment).
The brain uses up its neurological reserve as it recruits new areas to help with tasks previously performed by damaged areas. (Neurological reserve plays a large part in having a healthy brain that functions well.)
The symptoms of MS are more likely to progress when all neurological reserve is used up. Reproduced and adapted with permission from Oxford PharmaGenesis from Giovannoni G et al. Brain health: time matters in multiple sclerosis, © 2015 Oxford PharmaGenesis Ltd.
Time Increasing disability. A small amount of brain tissue loss is normal in healthy adults, but in MS this happens faster than usual Relapses are intense attacks of symptoms.
Disability progression is more likely if all of the brain’s neurological reserve has been used up urological reserve is used up as the brain adapts to compensate for tissue loss. Symptoms urological reserve Brain tissue loss bw lesions appear; all cause tissue loss (white) and some lead to relapses (orange) w lesions 9 Brain health:
A guide for people with multiple sclerosis References 1. Prakash RS et al. Aerobic fitness is associated with gray matter volume and white matter integrity in multiple sclerosis. Brain Res 2010;1341:41–51. 2. Kappus N et al. Cardiovascular risk factors are associated with increased lesion burden and brain atrophy in multiple sclerosis. J Neurol Neurosurg Psychiatry 2016;87:181–7. 3. Sumowski JF et al. Brain reserve and cognitive reserve protect against cognitive decline over 4.5 years in MS. Neurology 2014;82:1776–83. 4. Pinter D et al. Higher education moderates the effect of T2 lesion load and third ventricle width on cognition in multiple sclerosis. PLoS One 2014;9:e87567. 5. Modica CM et al. Cognitive reserve moderates the impact of subcortical gray matter atrophy on neuropsychological status in multiple sclerosis. Mult Scler 2016;55:36–42. 6. Sumowski JF et al. Intellectual enrichment lessens the effect of brain atrophy on learning and memory in multiple sclerosis. 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Hidden disabilities in multiple sclerosis – the impact of multiple sclerosis on patients and their caregivers. Eur Neurol Rev 2012;7:2–9. 14. Giovannoni G et al. Appendix 2. Relapses, lesions and brain atrophy indicate disease activity. Brain health: time matters in multiple sclerosis: Oxford PharmaGenesis, 2015: 61–63. doi:10.21305/ MSBH.001. 15. de Seze J et al. Patient perceptions of multiple sclerosis and its treatment. Patient Prefer Adherence 2012;6:263–73. 16. Costello K et al. Recognizing nonadherence in patients with multiple sclerosis and maintaining treatment adherence in the long term. Medscape J Med 2008;10:225. 17. Remington G et al. Facilitating medication adherence in patients with multiple sclerosis. Int J MS Care 2013;15:36–45. 18. Bunz TJ et al. Clinical and economic impact of five-year adherence to disease-modifying therapies in a commercially insured multiple sclerosis population. Value Health 2013;16:A109. 19. De Broe S et al. The role of specialist nurses in multiple sclerosis: a rapid and systematic review. Health Technol Assess 2001;5:1–47. 20. While A et al. The role of specialist and general nurses working with people with multiple sclerosis. J Clin Nurs 2009;18:2635–48. 21. Colhoun S et al. Multiple sclerosis and disease modifying therapies: results of two UK surveys on factors influencing choice. British Journal of Neuroscience Nursing 2015;11:7–13. 22. Polman CH et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol 2011;69:292–302. 23. Marrie RA et al. Changes in the ascertainment of multiple sclerosis. Neurology 2005;65:1066–70. 24. Runia TF et al. Application of the 2010 revised criteria for the diagnosis of multiple sclerosis to patients with clinically isolated syndromes. Eur J Neurol 2013;20:1510–16. 25. Giovannoni G et al. Appendix 1. Evidence supports the benefit of early treatment. Brain health: time matters in multiple sclerosis: Oxford PharmaGenesis, 2015: 57–60. doi:10.21305/MSBH.001. 26. De Stefano N et al. Clinical relevance of brain volume measures in multiple sclerosis. CNS Drugs 2014;28:147–56. 27. De Stefano N et al. Establishing pathological cut-offs of brain atrophy rates in multiple sclerosis. J Neurol Neurosurg Psychiatry 2016;87:93–9. 28. Rocca MA et al. Evidence for axonal pathology and adaptive cortical reorganization in patients at presentation with clinically isolated syndromes suggestive of multiple sclerosis. Neuroimage 2003;18:847–55. 29. Rocca MA et al. Functional MRI in multiple sclerosis. J Neuroimaging 2007;17 Suppl 1:s36–41. 30. Barkhof F et al. Relapsing-remitting multiple sclerosis: sequential enhanced MR imaging vs clinical findings in determining disease activity. AJR Am J Roentgenol 1992;159:1041–7. 31. Kappos L et al. Predictive value of gadoliniumenhanced magnetic resonance imaging for relapse rate and changes in disability or impairment in multiple sclerosis: a meta-analysis. Gadolinium MRI Meta-analysis Group. Lancet 1999;353:964–9. 32. Filippi M et al. MRI evidence for multiple sclerosis as a diffuse disease of the central nervous system. J Neurol 2005;252 Suppl 5:16–24.10 Brain health: a guide for people with multiple sclerosis Further reading and support MS Brain Health is calling for a radical change in the management of MS because time matters at every stage of diagnosis and treatment. You can register your support for the initiative and view other resources about brain health in MS at www.msbrainhealth.org. The following websites provide links to many MS patient organizations that give support and information about living with MS. Multiple Sclerosis International Federation (MSIF): www.msif.org/living-with-ms/find-ms-support-near-you/ European Multiple Sclerosis Platform (EMSP): www.emsp.org/members/ Endorsements This guide explains how people with MS can put into practice the recommendations from the report Brain health: time matters in multiple sclerosis, which can be found at www.msbrainhealth.org/report. As of 22 August 2018, the full report has been endorsed by the following organizations. Endorsements received since this date can be found at www.msbrainhealth.org. Accelerated Cure Project for Multiple Sclerosis ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) American Association of Neuroscience Nurses Australian and New Zealand Association of Neurologists BCTRIMS (Brazilian Committee for Treatment and Research in Multiple Sclerosis) Consortium of Multiple Sclerosis Centers Czech Multiple Sclerosis Society (Unie ROSKA) ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) European Brain Council European Multiple Sclerosis Platform Francophone Multiple Sclerosis Society (Société Francophone de la Sclérose en Plaques) German Multiple Sclerosis Society (Deutsche Multiple Sklerose Gesellschaft Bundesverband e.V.) International Multiple Sclerosis Cognition Society International Organization of Multiple Sclerosis Nurses International Society of Neuroimmunology Italian Multiple Sclerosis Association (Associazione Italiana Sclerosi Multipla) Japan Multiple Sclerosis Society LACTRIMS (Latin-American Committee for Treatment and Research in Multiple Sclerosis) MENACTRIMS (Middle East North Africa Committee for Treatment and Research in Multiple Sclerosis) MexCTRIMS (Mexican Committee for Treatment and Research in Multiple Sclerosis) MS Nurses Australia Inc Multiple Sclerosis Association of America Multiple Sclerosis Association of Kenya Multiple Sclerosis Australia Multiple Sclerosis Coalition Multiple Sclerosis Foundation (USA and Puerto Rico) Multiple Sclerosis International Federation Multiple Sclerosis Ireland Multiple Sclerosis Research Australia Multiple Sclerosis Society (UK) Multiple Sclerosis Society Malaysia Multiple Sclerosis Society of Canada Multiple Sclerosis Society of Greece Multiple Sclerosis Society of New Zealand Multiple Sclerosis Spain (Esclerosis Múltiple España) Multiple Sclerosis Trust (UK) National Multiple Sclerosis Foundation of the Netherlands (Nationaal MS Fonds) National Multiple Sclerosis Society (USA) New Zealand MS Research Trust Norwegian Multiple Sclerosis Federation (Multippel Sklerose Forbundet) PACTRIMS (Pan-Asian Committee for Treatment and Research in Multiple Sclerosis) Polish MS Society (Polskie Towarzystwo Stwardnienia Rozsianego) RIMS (European Network for Rehabilitation in Multiple Sclerosis) RUCTRIMS (Russian Committee for Treatment and Research in Multiple Sclerosis) Shift.ms Swedish Neurological Association (Neuroförbundet) UK Multiple Sclerosis Specialist Nurse Association United Spinal Association The Work Foundation (UK) 11 Brain health: a guide for people with multiple sclerosis Authors Mr George Pepper Shift.ms, Leeds, UK Professor Helmut Butzkueven Melbourne Brain Centre, Royal Melbourne Hospital, University of Melbourne, Parkville, VIC, Australia Professor Suhayl Dhib-Jalbut Department of Neurology, RUTGERS Robert Wood Johnson Medical School, New Brunswick, NJ, USA Professor Gavin Giovannoni Queen Mary University London, Blizard Institute, Barts and The London School of Medicine and Dentistry, London, UK Professor Eva Havrdová Department of Neurology, Charles University in Prague, Prague, Czech Republic Professor Jeremy Hobart Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK Dr Gisela Kobelt European Health Economics, Mulhouse, France Dr Maria Pia Sormani Biostatistics Unit, University of Genoa, Genoa, Italy Mr Christoph Thalheim Patient Advocate in Multiple Sclerosis, Brussels, Belgium Professor Anthony Traboulsee Department of Medicine, University of British Columbia, Vancouver, BC, Canada Professor Timothy Vollmer Department of Neurology, University of Colorado Denver, Aurora, CO, USA Acknowledgements Preparation of the full report from which this document was derived was funded by an educational grant from F. Hoffmann-La Roche, who had no influence on the content. MS Brain Health activities and supporting materials have been funded by grants from AbbVie, Actelion Pharmaceuticals, Celgene and Sanofi Genzyme, and by educational grants from Biogen, F. Hoffmann-La Roche, Merck KGaA and Novartis, all of whom had no influence on the content. Support for the independent writing and editing of this publication was provided by Oxford PharmaGenesis Ltd. The authors thank the following individuals for their support and consultation on the document: Amy Bowen (MS Trust, UK), Linden Muirhead (MS Trust, UK), Dan Rattigan (MS Society, UK), members of the MS Advisory Council, Victoria, Australia, and everyone who provided feedback via an online survey in May–June 2016. © 2016 Oxford PharmaGenesis Ltd. Reprinted 2017. Brain health: a guide for people with multiple sclerosis is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
