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MS research update – Ageing well with MS - what's the secret? – 21 November 2016

Summary

Canadians aged 55 and older who had been living with MS for more than 20 years responded to a survey question "from your point of view, what are the most important things that help you live long and healthy with MS?" 683 responses to this question were analysed.

Seven common themes emerged, with the vast majority attributing healthy ageing with to MS to combinations of the first three factors:

  • social connections - relationships with family, friends, neighbours and pets, support groups and volunteer work
  • attitude and outlook on life - positive approach, sense of humour, accepting and working within personal limits
  • lifestyle choices and habits - broad ranging theme, encompassing health and fitness and maintaining a "sense of purpose"

After these, the next most important theme was health care system; access to high quality care was highly valued. The three remaining themes of spirituality and religion, independence and finances came up much less frequently in responses.

The experiences of older people who have lived for decades with MS highlight those aspects of life which are most likely to make a big difference to younger people as they grow older. This can help people plan for the future and guide development of practical help and specialist services required to manage the challenges of ageing with MS.


Background

People with MS are living longer than in the past, probably as a result of a higher life expectancy in general and increasingly effective treatments for MS. For many of us it's not the quantity that matters, but the quality of our extra years. This study aimed to shed some light on what it takes to age relatively well when you have MS.

How this study was carried out

Canadian researchers sent out surveys to people older than 55 who have been living with MS for more than 20 years. On the last page of the survey, participants answered the question "From your point of view, what are the most important things that help you live long and healthy with MS?"

What was found

Surveys from 683 participants were analysed. The average age was 64, participants had lived with MS for an average of 33 years, and most people lived in their own home with a spouse or partner and required help with daily activities. Seven common themes emerged from responses to the final question but the vast majority attributed healthy ageing with MS to combinations of three of these:

Social connections - the most common factor people felt important for health ageing with MS covered relationships with family, friends, neighbours and even pets. It also included activities outside the home such as attending support groups and doing volunteer work.

Attitude and outlook on life - included thinking positively and being optimistic, having determination and a sense of humour in difficult situations, but also accepting and working within personal limits.

Lifestyle choices and habits - this theme covered many subthemes, showing just how personal this aspect of living well with MS can be. It included looking after health and fitness through diet, staying active and getting adequate sleep, as well as maintaining a sense of purpose through hobbies, work, travelling and seeking out resources and information on MS.

After these three, the next most important theme was health care system. Access to high quality care that was prompt, reflexive, and appropriate was highly valued. People appreciated health professionals that listened to their opinions, acknowledged their feelings and gave them encouragement. However, some respondents described bad experiences and frustrations at not being able to access treatments.

The remaining three themes were spirituality and religion, independence and finances and were referred to less frequently in responses.

What does it mean?

The researchers recognise a number of shortcomings of the study. The majority of those responding to the survey are living in their own homes so those living in care homes or sheltered housing are underrepresented, as are those with reading and writing problems. In common with most survey-based studies, people who have spent longer in formal education and have a more positive outlook may have been more likely to participate.

MS is often described as a disease of young and middle aged adults. Yet a significant number of all people living with MS are 65 or older. Until recently, little attention has been paid to the challenges of ageing with MS, and very few resources or services specifically designed for older adults with MS are available. However, there is a growing recognition that more attention should be paid to this topic.

In this study, the experiences of older people who have lived for decades with MS highlight those aspects of life which are most likely to make a big difference to younger people as they grow older. This can help people plan for the future and guide development of practical help and specialist services required to manage the challenges of ageing with MS.

Wallack EM, et al
Healthy aging from the perspective of 683 older people with multiple sclerosis
Multiple Sclerosis International 2016; 2016: 1845720
Abstract
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More about ageing well with MS

Making decisions and preparing for the future is an important element of self-management. Although MS is unpredictable and it's difficult to know how it will affect you in later life, you can begin to develop self-management skills which will help you to anticipate problems and find ways to resolve them. The MS Trust booklet, MS and me: a self-management guide to living with MS  looks at setting goals, problem solving and healthy living.

It can be helpful to discuss issues relating to living with multiple sclerosis with other people with first-hand experience. There are a host of support groups, both online and face-to-face, where you can share your own experiences and benefit from those of others.

Adopting a healthy lifestyle will keep you as healthy as possible and put you in the best position to deal with the challenges that MS brings.

Research by topic areas...

Co-existing conditions

Marrie RA, Patten S, Tremlett H, et al.
Chronic lung disease and multiple sclerosis: Incidence, prevalence, and temporal trends.
Mult Scler Relat Disord. 2016 Jul;8:86-92.
abstract
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Disease modifying drugs

Rath L, Vijiaratnam N, Skibina O.
Assessing understanding: patients prescribed natalizumab for multiple sclerosis individual risk and symptoms of progressive multifocal leukoencephalopathy.
Intern Med J. 2016 Nov 9. [Epub ahead of print]
abstract

Papeix C, Vukusic S, Casey R, et al.
Risk of relapse after natalizumab withdrawal: Results from the French TYSEDMUS cohort.
Neurol Neuroimmunol Neuroinflamm. 2016 Oct 28;3(6):e297.
abstract
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van Pesch V, Sindic CJ, Fernández O.
Effectiveness and safety of natalizumab in real-world clinical practice: Review of observational studies.
Clin Neurol Neurosurg. 2016 Jul 14;149:55-63. [Epub ahead of print]
abstract

Cocco E, Caoci A, Lorefice L, et al.
Perception of risk and shared decision making process in multiple sclerosis.
Expert Rev Neurother. 2016 Aug 4:1-8. [Epub ahead of print]
abstract

Martinelli Boneschi F, Comi G.
Assessing Functional Decline in Neurological Diseases Clinical Trials: Duration of Follow-Up - The Case of Multiple Sclerosis.
Front Neurol Neurosci. 2016;39:93-100.
abstract

Derfuss T, Ontaneda D, Nicholas J, et al.
Relapse rates in patients with multiple sclerosis treated with fingolimod: Subgroup analyses of pooled data from three phase 3 trials.
Mult Scler Relat Disord. 2016 Jul;8:124-30.
abstract

Evans C, Marrie RA, Zhu F, et al.
Adherence and persistence to drug therapies for multiple sclerosis: A population-based study.
Mult Scler Relat Disord. 2016 Jul;8:78-85.
abstract
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Marziniak M, Ghorab K, Kozubski W, et al.
Variations in multiple sclerosis practice within Europe - Is it time for a new treatment guideline?
Mult Scler Relat Disord. 2016 Jul;8:35-44.
abstract

Meissner A, Limmroth V.
Update on the cardiovascular profile of fingolimod in the therapy of relapsing-remitting multiple sclerosis (MS).
Mult Scler Relat Disord. 2016 Jul;8:19-26.
abstract

Drugs in development

Gold R, Radue EW, Giovannoni G, et al.
Safety and efficacy of daclizumab in relapsing-remitting multiple sclerosis: 3-year results from the SELECTED open-label extension study.
BMC Neurol. 2016 Jul 26;16:117.
abstract
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Epidemiology

Abdollahpour I, Nedjat S, Sahraian MA, et al.
Waterpipe smoking associated with multiple sclerosis: a population-based incident case-control study.
Mult Scler. 2016 Nov 10. pii: 1352458516677867. [Epub ahead of print]
abstract

Hormones and MS

Zapata LB, Oduyebo T, Whiteman MK, et al.
Contraceptive use among women with multiple sclerosis: a systematic review.
Contraception. 2016 Jul 21. [Epub ahead of print]
abstract

Other treatments

Brenton JN, Goldman MD.
A study of dietary modification: Perceptions and attitudes of patients with multiple sclerosis.
Mult Scler Relat Disord. 2016 Jul;8:54-7.
abstract

Plemel JR, Juzwik CA, Benson CA, et al.
Over-the-counter anti-oxidant therapies for use in multiple sclerosis: A systematic review.
Mult Scler. 2015 Oct;21(12):1485-95.
abstract
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Physical activity

Sandroff BM, Motl RW, Scudder MR, et al.
Systematic, Evidence-Based Review of Exercise, Physical Activity, and Physical Fitness Effects on Cognition in Persons with Multiple Sclerosis.
Neuropsychol Rev. 2016 Jul 22. [Epub ahead of print] Review.
abstract

Learmonth YC, Adamson BC, Balto JM, et al.
Multiple sclerosis patients need and want information on exercise promotion from healthcare providers: a qualitative study.
Health Expect. 2016 Jul 20. [Epub ahead of print]
abstract
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Pregnancy and childbirth

Benoit A, Durand-Dubief F, Amato MP, et al.
History of multiple sclerosis in 2 successive pregnancies: A French and Italian cohort.
Neurology. 2016 Jul 27. [Epub ahead of print]
abstract

Prognosis

van der Vuurst de Vries RM, van Pelt ED, Mescheriakova JY, et al.
Disease course after clinically isolated syndrome in children versus adults: a prospective cohort study.
Eur J Neurol. 2016 Nov 9. [Epub ahead of print]
abstract

Salter A, Tyry T, Wang G, et al.
Examining the joint effect of disability, health behaviors, and comorbidity on mortality in MS.
Neurol Clin Pract. 2016 Oct;6(5):397-408.
abstract

Cree B, Gourraud PA, Oksenberg JR, et al.
Long-term evolution of multiple sclerosis disability in the treatment era.
Ann Neurol. 2016 Jul 27. [Epub ahead of print]
abstract
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Kvistad S, Myhr KM, Holmøy T, et al.
No association of tobacco use and disease activity in multiple sclerosis.
Neurol Neuroimmunol Neuroinflamm. 2016 Aug;3(4):e260.
abstract
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Bove R, Musallam A, Xia Z, et al.
Longitudinal BMI trajectories in multiple sclerosis: Sex differences in association with disease severity.
Mult Scler Relat Disord. 2016 Jul;8:136-40.
abstract

Vasconcelos CC, Aurenção JC, Thuler LC, et al.
Prognostic factors associated with long-term disability and secondary progression in patients with Multiple Sclerosis.
Mult Scler Relat Disord. 2016 Jul;8:27-34.
abstract

Martin JE, Raffel J, Nicholas R.
Progressive Dwindling in Multiple Sclerosis: An Opportunity to Improve Care.
PLoS One. 2016;11(7):e0159210.
abstract
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Psychological aspects

Turner AP, Alschuler KN, Hughes AJ, et al.
Mental health comorbidity in MS: depression, anxiety, and bipolar disorder.
Curr Neurol Neurosci Rep. 2016 Dec;16(12):106. Review.
abstract

Jongen PJ, Heerings M, Ruimschotel R, et al.
Intensive social cognitive treatment (can do treatment) with participation of support partners in persons with relapsing remitting multiple sclerosis: observation of improved self-efficacy, quality of life, anxiety and depression 1 year later.
BMC Res Notes. 2016 Jul 29;9(1):375.
abstract
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Novo AM, Batista S, Tenente J, et al.
Apathy in multiple sclerosis: gender matters.
J Clin Neurosci. 2016 Jul 20. [Epub ahead of print]
abstract

Tracy VL, Basso MR, Marson DC, et al.
Capacity for financial decision making in multiple sclerosis.
J Clin Exp Neuropsychol. 2016 Jul 19:1-12. [Epub ahead of print]
abstract

Nunan-Saah J, Paulraj SR, Waubant E, et al.
Neuropsychological correlates of multiple sclerosis across the lifespan.
Mult Scler. 2015 Oct;21(11):1355-64.
abstract
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Rehabilitation

Squires LA, Williams N, Morrison VL.
Matching and accepting assistive technology in multiple sclerosis: A focus group study with people with multiple sclerosis, carers and occupational therapists.
J Health Psychol. 2016 Nov 15. pii: 1359105316677293. [Epub ahead of print]
abstract

Carling A, Forsberg A, Gunnarsson M, et al.
CoDuSe group exercise programme improves balance and reduces falls in people with multiple sclerosis: A multi-centre, randomized, controlled pilot study.
Mult Scler. 2016 Nov 10. pii: 1352458516677591. [Epub ahead of print]
abstract

Massetti T, Trevizan IL, Arab C, et al.
Virtual reality in multiple sclerosis - A systematic review.
Mult Scler Relat Disord. 2016 Jul;8:107-12.
abstract

Relapses

Kneider M, Lisovskaja V, Lycke J, et al.
Upper Respiratory Infections and MRI Activity in Relapsing-Remitting Multiple Sclerosis.
Neuroepidemiology. 2015;45(2):83-9.
abstract

Symptoms and symptom management

Secondary and tertiary treatments for multiple sclerosis patients with urinary symptoms.
Investig Clin Urol. 2016 Nov;57(6):377-383. Review.
abstract
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Vitkova M, Rosenberger J, Gdovinova Z, et al.
Poor sleep quality in patients with multiple sclerosis: gender differences.
Brain Behav. 2016 Sep 20;6(11):e00553.
abstract
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Cannabinoid buccal spray for chronic non-cancer or neuropathic pain: a review of clinical effectiveness, safety, and guidelines [Internet].
Ottawa (ON): Canadian Agency for Drugs and Technologies in Health; 2016 Sep 21.
abstract
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Sagawa Y Jr, Magnin E, Paillot L, et al.
Fampridine and quality of life in individuals with multiple sclerosis.
Springerplus. 2016;5(1):1070.
abstract
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Notcutt WG.
Clinical Use of Cannabinoids for Symptom Control in Multiple Sclerosis.
Neurotherapeutics. 2015 Oct;12(4):769-77.
abstract
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Work

Gyllensten H, Wiberg M, Alexanderson K, et al.
How does work disability of patients with MS develop before and after diagnosis? A nationwide cohort study with a reference group.
BMJ Open. 2016 Nov 17;6(11):e012731.
abstract
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