exercise for people with ms: a summary of the evidence and recommendations for practice

Exercise for people with MS: a summary of the evidence and recommendations for practice

Jenny Freeman* and Margaret Gear^

*Faculty of Health & Human Sciences, Plymouth University

^Gilbert Bain Hospital, Lerwick

Freeman&Gear/MSTrust/2015

• During recent years application of exercise therapy has become generally accepted in MS rehabilitation.

Mult. Scler 2005; 11:4:459-63

Lowered physical activity level


MS patients vs. healthy controls

Muscle strength Muscle mass Muscle activation Aerobic capacity (VO2-max) CVD risk Depression Fatigue

Daily activity level Functional capacity Balance

QoL

Slide from Dalgas, RIMS 2014


Dalgas et al. Mult. Scler.14(35);35-53:2008

Red arrow = Impaired in MS patients

Motl & Pillutti, Nat Rev Neurol; Sep;8(9):487-97.2012

ICF level

Body Functions

Activity

Participation


• Reduced speed

• Shorter strides • Prolonged double limb support phase • Altered muscle activity and kinematics • Skeletal changes

(Gehlsen et al 1986, Benedetti 1999, Morris 2002; Savci 2005, Martin 2006)


Balance impairment in those with no / minimal functional disability

(Kurst 2005, Martin 2006) Freeman&Gear/MSTrust/2015

Natural History of MS

Relapsing Preclinical Progressive

Relapses and impairment

MRI Total T2 lesion area

Time

MRI activity

Early / diagnosis Relapse remitting Progressive


One of the first questions (early on in the disease) is to ask….

What are you currently doing to manage your health? What exercise do you currently undertake? Is there anything that is putting you off exercising? Lets see how I can help as exercise has proven to be beneficial.


Exercise Research: Bench to Bedside

Neuroplasticity

Neural health

Immunology

Muscle

and

neural physiology

Factors impacting

on exercise

capability

Evaluation of

effectiveness

Collaboration between basic scientists, clinical trialists and clinicians Freeman&Gear/MSTrust/2015

Forms of exercise

used by pwMS

Strengthening

Aerobic exercise

Combined aerobic /resistance

Treadmill training (regular, robot-asst’d

Cycling ergometry

Pilates

Yoga

Tai chi

Group classes general ex.

Swimming

Hydrotherapy

Wii

Explored in trials

of MS

Year

1994 1996 1998 2000 2002 2004 2006 2008 2010 2012 2014

Pu

blic

atio

ns (

n)

0

10

20

30

40

50


Safety of Exercise 26 studies, n = 1295 Relapse Rate Ex = 6.3% Relapse Rate Control = 4.6% RR relapse Ex 0.73 RR relapse Control = 1.67 AE’s Ex = 2% (no higher than healthy populations) AE’s Control 1.2%

N=632 Self-report questionnaire No sig differences b/w exercisers / non exercisers in self report relapses previous 2 yr’s



Muscle strength Muscle mass Muscle activation Aerobic capacity (VO2-max) CVD risk Depression Fatigue

Daily activity level Functional capacity Balance

QoL

Slide from Dalgas, RIMS 2014

Effects of Exercise therapy

Dalgas et al. Mult. Scler.14(35);35-53:2008

Red arrow = Impaired in MS patients Green arrow = Improved after exercise in MS patients

Motl & Pillutti, Nat Rev Neurol; Sep;8(9):487-97.2012


Impact on Depression


Impact on Cognition

Intervention: An internet delivered program for increasing physical activity behaviour plus one-on-one video chat sessions with a behaviour-change coach. Measures: Self-report physical activity , disability status, 6MWT, and Symbol Digit Modalities Test at 0 and 6 months

Improved cognition on Symbol Digit Modalities Test


Potential Impact of Physical Activity on Brain Health and the Immune System

Mediates processes:

• Neuroprotective,

• Neuroregenerative,

• Adaptive (Neuroplasticity)

enhancement of neurotrophic factors

enhance stress resistance

influences balance of pro/anti-inflammatory response

(Gold et al 2003; Heesen et al 2003; White et al 2006; White and Castellano 2008; Golzari et al. 2010)


Guideline Recommendations: for people with mild to moderate MS

• Resistance Exercise: 2-3/week at moderate intensity (60-80% 1RM, 10 – 15 repetitions, 1-3 sets), minimum 8 weeks

Resistance Exercise: 2x/week moderate intensity (60-80% 1RM, 10 – 15 repetitions, 1-3 sets) minimum 8 weeks Aerobic Exercise:

2-3/week mod intensity (60-80% max HR) 30 minutes minimum 4 weeks


1.4 Modifiable risk factors for relapse or progression of MS 1.4.1 Exercise • Encourage people with MS to exercise. Advise them that

regular exercise may have beneficial effects on their MS and does not have any harmful effects on their MS.

1.5 MS symptom management and rehabilitation 1.5.8 Fatigue Consider a comprehensive programme of aerobic and moderate progressive resistance activity combined with cognitive behavioural techniques for fatigue in people with MS with moderately impaired mobility (an EDSS[5] score of greater than or equal to 4) Mobility or fatigue • 1.5.11Consider supervised exercise programmes

involving moderate progressive resistance training and aerobic exercise to treat people with MS who have mobility problems and/or fatigue.

• 1.5.13 Encourage people with MS to keep exercising after treatment programmes end for longer term benefits (see Behaviour change: individual approaches NICE public health guideline 49).

• 1.5.14 Help the person with MS continue to exercise, for example by referring them to exercise referral schemes.


http://www.nice.org.uk/guidance/cg186/chapter/1-recommendationsftn.footnote_5

http://www.nice.org.uk/guidance/ph49

Relative dearth of evidence in those with: progressive forms of MS

severe disability (> EDSS 6.5)


Designing exercise programmes Considerations:(1)

1.Individual differences

2.Specificity

3.Overload

4.Progression

5.Reversibility

6. Ms Specific Issues www.sportsmedicine.com

Slide from Dalgas, RIMS, 204 Freeman&Gear/MSTrust/2015

1. Individual Differences: “People respond differently to exercise because of differences in size and shape, genetics, past experience, chronic conditions, injuries and even gender”

2. Specificity “To become better at a particular exercise or skill, it is necessary to perform that exercise or skill”

3. Overload

“A greater than normal stress or load on the body is required for training adaptation to take place”

Can be done by increasing intensity, duration and/or frequency

Fleck & Kraemer; Designing Resistance Training Programs

4. Progression of overload

“There is an optimal level of overload that should be achieved, and an optimal time frame for this overload to occur” Freeman&Gear/MSTrust/2015

10mWT: 17% improvement

No effect at follow up

No exercise after 4weeks of ET

3 days/week

4 weeks


Resultater

2 classes/week; 1 individual session

Treadmill walking/running, cycling, stair-master, arm-strengthening, vollleyball,

outdoor walking, n= 13controls / 17exercise

* * *

*

*

*


Specific Considerations for Physiotherapy Practice

• Early intervention is beneficial. Timely referral requires good communication with MS nurses and Neurologists

• Exercise programmes of moderate intensity at 3 times / week are well tolerated with no apparent negative affects

• The principles of frequency, intensity, specificity and progression is required to optimise outcome, regardless of physiotherapy intervention.

• Before designing programme; assess the individual (physical activity patterns / physical effects of MS)

• Start conservatively and establish realistic expectations (30% rule)

• Supervise programmes to ensure workload progression


General Summary

• Scientific evidence demonstrates exercise is effective and safe

• People with MS remain less physically active

• There are many barriers and facilitators of exercise

• Adherence to exercise reduces over time

• Behaviour change interventions are required

• Crucial to translate this knowledge into practice


Useful reviews

Pilutti LA, Platta ME, Motl RW, Latimer-Cheung AE. The safety of exercise training in multiple sclerosis: A systematic review. J Neurol Sci. 2014

Latimer – Cheung et al. The effects of exercise training on fitness, mobility, fatigue, and health related quality of life among adults with multiple sclerosis: a systematic review to inform guideline development. Arch Phys Med Rehab . 2013; 94(9): 1800-1828.

Dalgas U, Stenager C. Exercise and disease progression in multiple sclerosis: can Exercise slow down the progression of multiple sclerosis? Ther Adv Neurol Disord 840 2012;5(2):81-95.


Useful reviews (continued)

• Kjolhede T, Vissing K, Dalgas U. Multiple sclerosis and progressive resistance training: a systematic review. Mult Scler 2012

• Pilutti, L. A., et al. (2013). Effects of exercise

training on fatigue in multiple sclerosis: a meta-analysis. Psychosom Med 75(6): 575-580.

• Motl RW, Gosney JL. Effect of exercise training on quality of life in multiple sclerosis: 384 a meta-analysis. Mult Scler 2008;14(1):129-35.


BMJ 2015;350:h1416 doi: 10.1136/bmj.h1416 (Published 19 March 2015) Freeman&Gear/MSTrust/2015

Section Overview

• Barriers to exercise for PwMS

• Development of Community Leisure Centre Based Exercise Classes for PwMS: how we addressed the barriers

Workshop:

• Local Models of Exercise Service Delivery

• Local Barriers

• Beating the Local Barriers


Do PwMS Value Exercise? • Exercise is ranked above conventional therapies such as physiotherapy (O’Hara et al 2000) •41% report exercise as the area about which they most commonly want advice (Somerset et al 2001) Top three exercise barriers, regardless of gender 1. Too tired 2. Impairment 3. Lack of time (Survey n = 417, Asano et al 2013)


Barriers: Fatigue • Among most common and devastating of MS symptoms

• Affects various components of health and wellbeing

• Characteristics of MS fatigue vary: Valuable for individual to learn to select appropriate strategies

• Exercise and education have a stronger effect on reducing fatigue compared to the two most commonly prescribed fatigue medications (i.e., Amantadine and Modafinil)

Asano & Finlayson 2014 Pilutti et al 2013


Barriers: Impairments impacting on ability to achieve desired levels of exercise

•Fatigue •Weakness •Poor co-ordination •Spasticity •Sensory disturbance •Visual disturbance

•Bladder & bowel dysfunction •Communication difficulties •Pain •Vertigo •Cognitive difficulties •Depression & anxiety

Variable, unpredictable, multi-factorial, generally progressive…. constantly changing over a lifetime


Other factors impacting on ability to exercise

Emotional • Dependence on family / community support • Decreased motivation • Coping skills Accessibility • Equipment • Location(s) • Expertise

• Time of day Freeman&Gear/MSTrust/2015

MS Specific Considerations: Heat Sensitivity

In demyelinated fibres: Increase of 0.5 degrees slows nerve impulse conduction Further increase ultimately blocks nerve impulse conduction Symptom exacerbation is proportional to degree of temperature elevation Rises in core temperature are greater in endurance programmes than in resistance programmes (White 2013; Skjebaek et al 2013)


Heat Sensitivity: Management strategies

• -ensure the exercise environment is not too hot

• -drink cold water before, during and after exercise

• -pre-exercise cooling can be beneficial (cool shower)

• -wear light clothing during the activity

• -work at a pace that does not allow overheating

• -build in rest breaks as needed

• -post exercise cooling (cool shower or bath, cold packs)

• -consider interval training

• -consider water training (water dissipates heat 25x faster than air)


Transient neurological symptoms

Common (e.g. fatigue, visual, sensory {~40%}

disturbance) In ~ 85% of people these resolve / return to normal within 30 – 60 minutes, or more rapidly with cooling (Smith et al 2006,White et al 1997)

• Start slowly - build up intensity & duration • “Listen to your body” - monitor the impact of

exercise on changing symptoms • “2 hour rule”


Community Leisure Centre Based Classes Shetland Islands, Scotland

•One of the highest incidences of MS in the world (Visser et al 2011)

•High exercise drop-out rates (Kayes et al 2011)

•PwMS said “they wanted to exercise and to use leisure facilities, but that

local mainstream leisure facilities did not meet their needs”

•The local leisure provider keen to have PwMS but required support

•Aim: sustainable specialist MS exercise service in the community

•Barriers to exercise identified in literature and local patient questionnaire

•Required a cultural shift


Identifying Local Barriers to Exercise

Gyms can be

intimidating if you are not

super fit

Required culture shift for PwMS, Physios, & Leisure Provider

Previous experience of not coping

Local Service MS Questionnaire


Extrinsic Barriers: Access ‘I was so exhausted after propelling my wheelchair into the building that I couldn’t do any exercise. I just went home again.’ ‘I was really tired after the long walk from the car park to the main entrance. I knew after that I wasn’t going to manage the stairs down to the MF room.’


Building Access: Solutions • Open up door at rear of building, near car park

• Level access, straight into exercise room

• NHS funded chairs for those waiting

• Accessible toilets < 10m

• Pay in exercise room


Extrinsic Barriers: Safety • Risks assessed for whole service and each individual participant

• Exercise instructors trained with: Later Life, Oxford Brooks University & NHS Shetland

• Mangar Elk for those unable to get up from floor: training for instructors

• Study chairs provided

• Sturdy tables brought in

• Grab rails for exercise

• Criteria for referral agreed

• Direct referral back to neurophysio


40 minute drive

1 hour drive

1 hour drive

2.5 hour drive & 2 ferry crossings

(5 hour round trip)

Destination

Extrinsic Barriers: Transport

Voluntary Sector: •MSS car + driver •Red Cross (10 mile radius) •WRVS 14p / mile

Lifts with friends Some PwMS still cannot access transport to the classes: they need a different model

10 mile radius


• Fatigue assessed by MDT and education on fatigue offered

• Fatigue levels also self assessed before and after 3 months exercise

• Exercise and progression rates individually tailored

• Participants encouraged to rest as required; chairs available throughout room

• Half time called for each exercise station; rest if required

• Rest break for all half way through class

• Participants rate their ability to self pace on referral to leisure centre

• Initial questionnaire asked preferred time of day

Intrinsic Barriers to Exercise: Fatigue


Tackling Intrinsic Barriers to Exercise: Impairment

• Multiple individual impairments, esp bowel / bladder dysfunction & cognition low self efficacy

• Previous experience of not coping in mainstream exercise groups

• Individual coping strategies for impairments devised during physio led individual exercise sessions, then group sessions

• Referral form to leisure centre completed by participant + physio. Impairments and coping strategies listed on form

• Small group supported each other to integrate into larger leisure centre group. This approach may help to overcome anxieties


Referral Process

Participant assessed by physio as meeting inclusion / exclusion criteria for exercise classes

Introduced to exercise programme in physiotherapy

?Confident and able to attend leisure centre classes?

NO

Physio led exercise class to gain ability, strategies and confidence

to attend leisure centre

Refer whole physio led group to larger leisure centre group

YES

Refer individual directly to leisure centre classes

Participant or exercise instructor can refer directly back to physio if condition

changes


Bowel / bladder

dysfunction

• Gym room with toilets immediately adjacent

• Break half way through

• Warm-up exercises include pelvic floor exercise

Communication / cognitive difficulties

• All information (e.g. personalised exercise diaries, class times, venue, directions) provided in large font 14 clear print in addition to verbal information.

• Large pictures of each exercise

at each station • ‘Buddy’ system for exercise

class

• Initial text reminders

Visual Disturbance

• Ensure adequate lighting

Adjustments by Leisure Provider


Heat Sensitivity • Negotiate with leisure centre re room temperature • Advised re loose light clothing • Rest breaks built in

• Cooled water available throughout and served at break

time. Feedback from participants (3 month audit) was that this was the strategy that worked best for them


Lack of Time • Actual time commitments do not

predict perceived lack of time for physical activity (Heesch & Masse 2004)

• Lack of time may really be lack of prioritisation

• Education about benefits of exercise to encourage prioritisation • Initial questionnaire asked

participants about their preferred days / times for exercise classes. All groups requested week days, late morning or early afternoon.


Barriers

Aim: Self Efficacy

Self-efficacy: one's belief in one's ability to succeed in specific situations or accomplish a task


But we didn’t win ‘em all!


End Result:

Community Leisure Centre Based Exercise Classes Participants allocated to groups dependent on mobility level 3 evidence based exercise programmes: –Wheelchair users/those unable to get down to the floor –Mobile with bilateral support or at high risk of falls –Mobile with or without unilateral support 1 or 2 x weekly class (1 hour, 10 - 20 participants) Supported by a home exercise diary; participants encouraged to exercise x3/week


Community Leisure Centre Based Classes Warm up (Core Stability Component)

Warm-up –Wheelchair user group: seated –Mobile groups : core stability exercises http://www.therapistsinms.org.uk


Standing Circuit Components

Wall push ups Stand up and walk round chair Wall slides Heel raises

Toe lifts Step Ups

Side stepping

Circuit walking

Single leg balance

For each exercise additional support can be provided, or alternatively the exercise can be made more challenging. Speed and number of reps are increased very gradually, <10% per week, as able.

Heel Toe walking

Balance pad


Written home exercise diary detailing each group’s exercises, with level of exercise for individual participant detailed Participants encouraged to exercise at least three times a week: Initial pilot classes led by physiotherapists Has been run by specialist exercise instructors for 3 years

Community Leisure Centre Based Classes

Session > 1 2 3

Week 1 Lengths

Week 2 Lengths

Week 3 Lengths

Week 4 Lengths

Week 5 Lengths

Week 6 Lengths

Week 7 Lengths

Week 8 Lengths

Week 9 Lengths

Week 10 Lengths

Week 11 Lengths

Week 12 Lengths

Side Steps

With support step 2

metres to the left,

facing the same

direction step 2 metres

to the right, this counts

as one length.


Participant Feedback

I’m able to run for the first

time in years

My legs feel a little spaegie* the next day

The class gives us the discipline most of us need to keep

going with exercises


Now > half of all PwMS living in Shetland attend the

classes: Proven sustainable over 4 year period

• High uptake (62% participated, maintained over 4yrs)

• 0% dropout rate (5 month evaluation)

• 100% enjoy exercising within a group (questionnaire)

• 86% noticed functional improvements (questionnaire)

• 90% improved on clinical measure (s) of balance /

mobility (3 month audit)


Web-based Physiotherapy Telerehabilitation

• Using technology to deliver rehabilitation services over a distance

• Can provide an alternative to face to face therapy

• Can support self management through personalised targeted programmes

Huijgen et al 2008, ; Finkelstein et al 2008; Paul et al 2014

Targeted programme developed following a face to face physiotherapy assessment:


http://www.webbasedphysio.com/my-programme/exercises/aerobic-exercise-level-1/

Glasgow University / Multiple Sclerosis Service NHS Ayrshire and Arran, Scotland Freeman&Gear/MSTrust/2015











Evaluation: web–based physiotherapy • Pilot RCT (N = 30) • Moderate MS ( EDSS 5 – 6.5) • 12 weeks individualised web-based physiotherapy, 2/week • Online exercise diaries monitored; participants telephoned

weekly, exercise programmes altered remotely

Results • Web-site easy to use, convenient, and motivating • No significant difference between groups for mobility,

balance, symptoms or depression; except in MSIS-29 • Average log in 1.3/week (↓ from 2.1 to 0.9 over the 12

weeks)

• N.B. Of the 138 invited only 38 wished to participate (and a further 8 didn’t meet criteria) Freeman&Gear/MSTrust/2015

Workshop

Describe models of exercise services for people with MS that are working well in your local area


Models of Exercise Delivery: examples highlighted by participants in the workshop

• Partnership between physio and the local gym (partly sponsored by cricket club)

• Activity for Health - council run Charity run exercise groups


Workshop

What are the barriers to exercise for people with MS in your local area?


Barriers: examples highlighted by participants in the workshop

• Mixed ability - require too many groups • Gym classes - worried how people perceive them • Transport • Work • Fatigue • Cognition / memory • Patients become demotivated • Lack of specific equipment • Lack of awareness of facilities / groups / opportunities In NHS • Physios don't have exercise instructor skills • Limited time slots in local gyms • Inequity of service provision


Workshop

Note any solutions to these barriers on your sticky notes and stick them on the relevant flip chart


Solutions: suggestions by participants in the workshop


For transport difficulties: • Car share scheme • Volunteer driver bureau • Approach MS Society

Training solutions: • Physio training CoS, e.g. Physio UK • Council REP level 4 exercise instructors could impart training • Knowledge and education for providers

For demotivation: • Keep patients challenged • Alternate b/w programmes • Competition b/w patient

groups to encourage exercises

For lack of awareness of facilities: • Education for GPs, local gyms • In service enhancement • Relationships with local sources • GP referrals - more proactive

Funding solutions: • Big lottery • Corporate funding • Charities - e.g. Red Cross, MS

Society, Age Concern

Other approaches/ideas: suggestions by participants in the workshop

• Riding is good exercise

• More individualised programmes

• Seated exercises; Thai chi, yoga

• Exercise buddy

• Open gym sessions in therapy centres

• Educating employers

• Councils having specialised areas for all service users with neurological disorders

• Appropriate referrals


exercise for people with ms: a summary of the evidence and recommendations for practice

Healthcare