22/04/2016

FACETS of MS-fatigue Sarah Thomas, Clinical Research Unit Bournemouth University, Faculty of Health and Social Sciences, UK

A little about me •

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•

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Am in Hobart on a Visiting Scholarship for 3 weeks (hosted by Prof  Ingrid van der Mei) at the Menzies Institute for Medical Research,  University of Tasmania. PhD in psychology and work at Bournemouth University in Dorset  (SW England) in a small clinical research unit. Led the development of FACETS, a group‐based fatigue  management programme for pwMS currently being rolled out in  the UK.  Working with Ingrid and colleagues here in Tasmania to obtain  funding to develop and evaluate a cognitive behavioural fatigue  management programme for those who are in employment  drawing on existing programmes

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A quiz - just for fun 1. What is the most common symptom in MS?

a.

Balance problems

b. Muscle stiffness c.

Fatigue

d. Numbness/tingling Source: MS Society Symptom Survey 1997

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2.  Approximately what percentage of people report  fatigue as a currently experienced symptom?  a. b. c. d.

15% 35% 65% 85%

3. Approximately what percentage of people report  fatigue as one of their three worst symptoms?  a. b. c. d.

Between 10 and 20% Between 20 and 40% Between 40 and 60% Between 60 and 80%

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4. Approximately how many people report fatigue as  their worst symptom?

a. b. c. d.

Between 10 and 20% Between 20 and 40% Between 40 and 60% Between 60 and 80%

5. What would you consider to be the main cause  of unemployment in people with MS? a. b. c. d.

Access People’s attitudes Fatigue Mobility problems

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Agree or disagree? 1. Fatigue in MS is no different from the fatigue that everyone gets

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2. The experience of fatigue is very similar across people with MS

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3. Fatigue is always an obvious symptom to others

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4. Fatigue affects day-to-day living

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5. Fatigue is a sign of laziness

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6. Physical activity should be avoided if you have MS fatigue

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7. A warm bath usually helps MS fatigue

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Agree or disagree? 8.

It is possible to have severe fatigue while having few other symptoms of MS

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9.

In MS the symptom of fatigue doesn’t seem to be related to length of time with MS

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10. Feeling low has no impact on MS fatigue

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11. Some medications can make fatigue worse

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12. Fatigue in MS can affect memory & concentration

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13. Fatigue in MS is always the result of physical activity

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14. A healthy lifestyle (sleep, exercise, diet) can help reduce the impact of fatigue

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Agree or disagree? 15. Rests should only be taken once fatigue sets in

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16. You should push yourself to the limit when your energy levels are highest

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17. Using labour saving devices is ‘giving in’ to fatigue

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18. Stress can make fatigue worse

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19. Doing quizzes like this can make fatigue worse

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MS-FATIGUE - what’s it like? I don’t think you can…..you  can’t describe fatigue. It’s  different every day, it’s  different for every part of  your body. 

I feel tired  when I wake  up every  morning

Source: FACETS pilot work

I think I speak for  everybody & say that we  fight the problem every  day.  There is always a  problem every day, isn’t  there?

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Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks

Source: Michelle Ennis. Living with Fatigue, UK MS Trust

Source: FACETS pilot work

you start a sentence and  when you’re very  fatigued you can’t even  remember how you were  going to end it and then  you can’t remember how  you started it

when it really kicks in you  just want to sit and do  absolutely nothing.  You  don’t want to think, you  don’t want to look at the  television you don’t want  to read, you just want to  stare into space

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….it is much more than just being overly tired  …It causes me to feel weak, light headed and  nauseous, it affects my eyesight and causes  my speech to slur and I find it impossible to  concentrate on whatever I was doing. This  can happen to me many times in a day and it  is a lot worse if I become warm.  Anonymous, MS Society chat rooms

Source: MS Society, MS Essentials 14 Fatigue, August 2014, 3rd Edition

What is your MS-fatigue like?

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Definition “A subjective lack of physical and/or  mental energy that is perceived by the  individual or caregiver to interfere with  usual or desired activities”

MS Council for Clinical Practice Guidelines 1998

Challenges of fatigue

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Multiple Sclerosis Primary Fatigue Secondary Fatigue

Physical health

Environment Physical Social Institutional Cultural

Fatigue is identified as a significant problem Psychological health Anxiety Stress Depression Other

Comorbid conditions Drug side  effects

Sleep disorders Primary Secondary

Normal fatigue

From MSC 1998

Fatigue - invisible

Well, my family forget…. I think they genuinely forget  coz I just walk into the house  as I am.  I haven’t got a label  on my head…..

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Fatigue

Fatigue

Fatigue

Fatigue

Primary fatigue Lassitude

Short circuiting fatigue

Heat sensitive fatigue

Cognitive fatigue

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Secondary fatigue

Making the most of available energy

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Activity diary (example) Time

F

V

S

Activity

Comment

4

5

7

Fixing breakfast standing 15 minutes (cool)

Blurred vision

6:00AM 7:00AM

8:00AM

1-10 (1= very low; 10 = very high) F = fatigue level V = value of activity S = satisfaction you feel with your performance

Activity diary….. ‘‘For me using the diary it was really good because I just  didn’t really think about it, didn’t take a step back and sort  of quantify when my fatigue times were….It enabled me to  identify when I’m going to feel fatigued or worse than other  times, then plan my time accordingly and it’s all individual’’

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Energy measure LOW (not tiring)

MEDIUM (moderately tiring)

Listening to the radio Watching TV

Driving to work/school run Playing Nintendo Wii Surfing the internet Talking on the phone Reading the newspaper/book Walking the dog

Light housework Brushing teeth Making a cup of tea

Making dinner Getting showered Attending meetings Walking up stairs Getting dressed Shopping (using scooter) Washing the car Ironing (sitting down)

HIGH (very tiring) Socialising in the evening Gardening Going for a hike

Mowing the lawn Going supermarket shopping Ironing (standing up) Vacuuming Making the beds Shopping (using sticks)

….you’ve just got to try and keep your  energy for things that you enjoy .....and if you’re just kind of going  round in circles getting tireder and  tireder and doing things which  someone else can do it’s stupid  really….. but it takes you a while to  work that out

Source: FACETS pilot work

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Poor energy management Overdoing it when energy is high & paying later

Doing too little and feeling lethargic

Feeling you have to push through & finish tasks in one go

Not matching activities to energy levels

Never having energy left for enjoyable activities

Finding it difficult to ask others to do things

Not planning ahead

Poor energy management Boom-and-bust

Activity

‘Good’ day

‘Bad’ day Time

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Feelings of  frustration and  inadequacy

“I must do as  much as I can  ‐ while I still  can”

“Boom & Bust” Exhaustion,  wiped out;  increased  symptoms

Overdoing it  on good days  and paying  for it later

Fatigue management tips Leading a healthy lifestyle •

Try to keep generally fit (balance exercise and rest)

•

Eat a well balanced diet

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Avoid heavy meals or only plan a light activity afterwards

•

Excess weight, alcohol and smoking can all have negative  effects on fatigue

•

Good quality sleep and planned rests; use relaxation  techniques such as soft stomach breathing

•

Keep cool

•

Minimise stress 

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Fatigue management tips Maintaining a base level of activity

Activity

much smaller variations in activity levels

Time

Fatigue management tips Balancing activity and rest

ACTIVITY

REST

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Fatigue management tips Pacing I found that doing anything physical for more  than 10 minutes was a disaster ‐ my balance and  coordination go to pot. But do something for 10  minutes and then a nice long rest and I’m OK ‐ even 2 minutes extra pushes me over the edge.  Jane Wilson, UK MS Society chat rooms

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WEEKLY PLANNER/REMINDER MON

TUES

WED

THURS

FRI

SAT

SUN

Before 6.00 7.00 8.00 9.00 10.00 11.00 12.00 1.00PM 2.00 3.00 4.00 5.00 6.00 7.00 8.00 9.00 10.00 After 10.00

“Time not Task” Replace TASK…..

with TIME

•

Clean the house

•

15 minutes housework

•

Empty the ironing basket

•

20 minutes ironing

•

Prepare dinner

•

10 minutes peeling veg. 

•

Tidy office

•

15 minutes tidying office

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Prioritisation sheet DO Make sure this  column contains  some activities  you enjoy doing  as well as those  you have to do

DELAY

DELEGATE

DITCH

Can it wait?

Can you ask  someone else to  do it/or share  the task?

Can you  eliminate it  altogether?

Can the activity  be graded?

Reflecting on prioritisation …..the thing is you have to learn to say  “it can wait” ……the main thing it [FACETS]  has taught me is to prioritise ……it made  me think what do I actually have to do  today, & then what would I like to do if I’m  up to it and what can wait ‘til tomorrow.   And there’s a whole lot of things in lives  that you know they can wait ‘til tomorrow,  they can wait ‘til next week and it’s  getting that mentality Source: FACETS pilot work

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Fatigue management strategies I’ve tried to limit the  things I ‘must’ do in   favour of what I  want to do 

Naps are a  daily routine  now and  useful I think delegating  has helped a lot.  Cleaning, cooking,  walking the dog 

Whereas before I was  working like an idiot  during my good time  of the day….I now rest  during the morning  and am not so tired in  the afternoon

I allow myself to  rest as soon as  needed, then  complete my  task later 

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Fatigue management strategies It’s the added things, the  unexpected things that  happen that you didn’t  plan for and learning to  say ‘no’ to those

I try to take moderate  regular exercise (e.g.  Pilates, walking)

Source: FACETS pilot work

Fatigue management strategies If there is something that you  are looking forward to you have  to kind of really really rest and  doing nothing the day before &  make sure you have a blank day  the day after so that you can  actually do that

Source: FACETS pilot work

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Fatigue management strategies Planning my day rather  than sort of going for as  long as I can and putting  myself on my knees before  I succumb to rest

I don't make long term  plans.  I am more  spontaneous.  If I have a  good day I do something. Source: FACETS pilot work

What can get in the way? “Resting in the afternoon is very alien  to me ‐ that’s what my granny used to  do.   But that’s why I end up not being able  to do what I want to do” Source: FACETS trial

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What can get in the way? “My own reluctance to ‘give in’ which often  results in my overdoing it to the point of  inducing severe fatigue which exacerbates  other symptoms” “People expect me to still do everything I used  to and don't seem to hear the word ‘no’ ” Source: FACETS trial

Cognitive Behavioural Approach

“People are disturbed not by things, but by the views they take of things” (Epictetus, Roman philosopher, 55- 135 AD)

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Friend is What you THINK… half an hour late She might have been for dinner hurt on the way here

How you FEEL…

What you DO…

Worried or anxious

Make phone calls

She didn’t even bother Annoyed/ to let me know she was angry delayed!

Be moody when she shows up

It doesn’t matter to Indifferent me whether people are on time

Nothing in particular

Oh that’s handy she’s running late that gives me a chance to put my feet up with a glass of wine

Relax and enjoy yourself

Relieved

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Cognitive behavioural approach Is  concerned with: • Individuals’ attitudes & ways of thinking (that’s the 

‘cognitive’ part)  • what they do (that’s the ‘behavioural’

bit).

• based on the theory that cognitions, emotions & 

behaviour interact and

that sometimes changing how we think about a  situation influences what we feel and what we do.

Cognitive behavioural model

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Fatigue-related thought diary SITUATION

UNHELPFUL THOUGHTS

EMOTIONS

Having a rest in the afternoon

I am being lazy there’s so much that needs doing

Guilt

Making a mistake at work when I’m feeling tired

I’m a liability

Sadness

Feeling exhausted when I woke up My partner coming home and saying “is that all you’ve done all day?”

Oh no this must mean a relapse is on its way I’m not contributing my fair share I’m letting the family down

Anxiety Anger Hurt Guilt

The [FACETS] course made me realise I didn’t have to  feel guilty for not being able to do everything I used  to do. I’ve learnt to say no. I’ve slowed down and  am able to lie down in the afternoon and relax.

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“The [FACETS] course made me realise I didn’t have to feel guilty for not being able to do everything I used to do. I’ve learnt to say no. I’ve slowed down and am able to lie down in the afternoon and relax.”

What is ‘FACETS’?

Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle

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FACETS •

Six week manualised group‐based fatigue management  programme 

•

Blends energy effectiveness and cognitive behavioural  approaches

•

Delivered by occupational therapists, physiotherapists,  MS Specialist Nurses

•

Aims to support people in a group setting to:  - Learn about MS fatigue  - Learn strategies to help make the most of available energy  - Learn how to think in more helpful ways about fatigue

SESSION

TITLE

HOMEWORK

1

What is MS-related fatigue?

Activity diary

2

Opening an ‘energy account’

Rest/sleep/activity planner, energy measure

3

Budgeting energy and ‘smartening up’ goals

S.M.A.R.T. goals

4

Stress & the cognitive behavioural model

Thought diary

5

Putting unhelpful thoughts on trial

6

Recapping & taking the programme forward

Thought challenge sheet

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FACETS • Effectiveness of FACETS demonstrated in a large 

national randomised controlled trial. • MS Society supporting roll out of FACETS across the UK 

via one day training courses (developed by the research  team) for health professionals. • Over 200 health professionals 

in the UK have been 

trained to deliver FACETS. • Around 1500 pwMS in the UK have received the FACETS 

programme.

Feedback after FACETS •

“The course made me realise I didn’t have to feel guilty for not  being able to do everything I used to do.” 

•

“I think the thing is that you think you have to be all things to all  people and you can’t and sometimes it’s accepting that.”

•

“I’m no longer embarrassed about asking for help from others ‐ even when going shopping in my wheelchair and surprise,  surprise, people are happy to help.” 

•

“I feel now that I can just say no if I’m not feeling up to it.”

•

“It was very helpful to me. I learnt a lot and it has made my life  SO much easier. I would recommend it to anyone.” 

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• “Real life doesn’t always go to plan and even when events fit nicely  on a planner chart with rests planned in ‐ things just happen and  throw carefully planned days into disorder so I’m learning to ‘go with  the flow more and more.” • “I still work full time which I love but [fatigue management] can be  hard sometimes. I do try to get a balance but not always possible.”  • “Although my family want me to rest and not push myself and  verbally say they will help me more in theory,  they are too busy/too  tired etc. to actually do anything.”  (Thomas et al., 2015)

Finally…. Before I used to battle with it [fatigue], convinced that I could beat it . . . but since taking this course I’ve realised that perhaps I can’t beat it, I can manage it. (FACETS pilot work, 2010)

You might not be able to control the fatigue, you know that’s going to be there, it’s the feature of this condition but you can control how you manage it.

(Dures et al., 2012)

Dures E, Kitchen K, Almeida C, et al. “They didn’t tell us, they made us work it out ourselves”: patient perspectives of a cognitive behavioral program for rheumatoid arthritis fatigue.’ Arthritis Care Res 2012;64:494–501.

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The Team

Peter Thomas Sarah Thomas Statistician/ Research Psychologist/ Methodologist Methodologist (Trial Chief Investigator) (Led development of FACETS programme)

Paula Kersten Research Physiotherapist

Rosie Jones Clinical Scientist

Roger Baker Clinical Psychologist

Charles Hillier Consultant Neurologist Lead for Dorset MS Service

Angela Davies Colin Green Smith Health Economist Research Physiotherapist

Alison Nock Occupational Therapist

Kate Galvin Nursing Practice/ qualitative expert

Vicky Slingsby Occupational Therapist

Geoff Linder Tim Worner Service Users

FACETS References UK MS Charity magazines: Thomas S. Maximising your energy. MS Matters Dec 2013. UK MS Society. https://www.mssociety.org.uk/sites/default/files/MS‐Matters‐Nov‐Dec‐2014‐England.pdf Nock A, Slingsby V. Introducing FACETS into practice.  An evidence‐based group fatigue management programme. Way Ahead. MS  Trust.  http://mstrust‐noredirects.idnet.net/professionals/information/wayahead/downloads/1803‐wayahead‐facets‐fatigue‐management‐ pages‐8‐9.pdf Academic articles: Thomas S, Kersten P, Thomas PW, Slingsby V, Nock A, Jones R, Davies Smith A, Galvin KT, Baker R, Hillier C. Exploring strategies used  following a group‐based fatigue management programme for people with multiple sclerosis (FACETS) via the Fatigue Management  Strategies Questionnaire (FMSQ). BMJ Open 2015;5:e008274 doi:10.1136/bmjopen‐2015‐008274 Thomas S, Kersten P, Thomas PW. The Multiple Sclerosis‐Fatigue Self‐Efficacy (MS‐FSE) scale: initial validation. Clin Rehabil.  2015;29:376‐87.  Thomas PW, Thomas S, Kersten P, Jones R, Slingsby V, Nock A, Davies Smith A, Baker R, Galvin KT, Hillier C. One year follow‐up of a  pragmatic multi‐centre randomised controlled trial of a group‐based fatigue management programme (FACETS) for people with  multiple sclerosis. BMC Neurol 2014;14:109.  Thomas S, Thomas PW, Kersten P, Jones R, Green C, Nock A, Slingsby V, Davies Smith A, Baker R, Galvin KT, Hillier C. A pragmatic  parallel arm multi‐centre randomised controlled trial to assess the effectiveness and cost‐effectiveness of a group‐based fatigue  management programme (FACETS) for people with multiple sclerosis. J Neurol Neurosurg Psychiatry 2013;84:1092‐9.  Thomas S, Thomas PW, Nock A, et al. Development and preliminary evaluation of a cognitive  behavioural approach to fatigue  management in people with multiple sclerosis. Patient Educ Couns 2010;78;204‐210. Thomas PW, Thomas S, Kersten P, et al. Trial Protocol: Multi‐centre parallel arm Randomised controlled trial to assess the  effectiveness and cost‐effectiveness of a group‐based cognitive  Behavioural approach to managing fatigue in people with  multiple sclerosis BMC Neurol 2010;10:43. Doi:10.1186/1471‐2377‐10‐43.

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