This presentation by Alison Nook and Vicky Slingsby, Occupational Therapists at the Dorset MS Service, explores fatigue in multiple sclerosis, the most common MS symptom. It looks at how fatigue can be managed with energy effectiveness techniques and introduces FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle),

1. Understanding fatigue and an introduction
Dorset MS Service
to
the FACETS programme
Alison Nock, Vicky Slingsby, Occupational Therapists,
Dorset MS Service, Poole Hospital NHS Foundation Trust

2. Fatigue in multiple sclerosis
 Most common symptom in MS
 Up to 86% report current fatigue
 Over 75% experience severe fatigue
 50-60% consider fatigue to be one of three most troubling
symptoms
 Main cause of unemployment
 Findings equivocal r.e. relationship to neurological impairment,
neuropsychological performance, disease duration, disability,
gender or age
 Invisible nature can lead to misinterpretation/difficulties in personal
and work relationships

3. Fatigue - invisible

4. Fatigue - challenges

5. 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 they just forget all the
time & I just sit there & think
“oh I’m so tired”
If you say you’ve
got fatigue they
say “oh yeah I get
tired”

6. 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 think I speak for
everybody & say that we
fight the problem every
day. There is always a
problem every day, isn’t
there?
I feel tired
when I wake up
every morning

7. 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

8. Definition of fatigue
“A subjective lack of physical and/or mental
energy that is perceived by the individual or
caregiver to interfere with usual or desired
activities”
(Clinical Practice Guidelines, 1998)

9. ….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

10. Multiple Sclerosis
Primary Fatigue
Secondary Fatigue
Fatigue is
identified as
a significant
problem
Normal fatigue
Environment
Physical
Social
Institutional
Cultural
Psychological
health
Anxiety
Stress
Depression
Other
Physical
health
Comorbid
conditions
Drug side
effects
Sleep
disorders
Primary
Secondary
From MSC 1998

11. Primary fatigue

12. Secondary fatigue

13. Fatigue management
A means of facilitating coping behaviours via:
 Education regarding both fatigue management
principles as well as practical problem solving
which aims to address fatigue
 Requires a co-ordinated approach
 Involves active participation of pwMS and by
those in contact with the individual

14. Fatigue management
“a process by which the individual increases
understanding of the factors which
contribute to & exacerbate his/her fatigue.
Then through education & adaptation,
he/she learns to optimise function within
the context of fatigue through goal setting
& the use of energy conservation
strategies”
(Harrison 2007)

15. The ‘boom-and-bust’ pattern
‘Bad’ day
Activity
Time
‘Good’ day

16. Energy effectiveness techniques
 Take frequent rests
 Prioritise activities
 Plan Ahead
 Organise tools, materials and work areas
 Adopt a good posture
 Lead a healthy lifestyle and exercise

17. Putting it into practice
 Common sense principles but need to put
theory into practice
 Daily/weekly record along with fatigue level
 Identify baseline to work from
 Build in routines
 Adopt the right attitude for change, positive
self talk and acceptance important to make
changes
 Support and communication

18. Self-management
 How a chronic condition impacts upon daily
life and the ways in which people can take
greater control over their condition on a day-to-
day basis
 Self-management programmes can be
specifically designed to reduce the severity of
symptoms and improve confidence,
resourcefulness and self-efficacy.
Source: Department of Health. The expert patient: a new approach to chronic disease
management for the 21st century. London: DoH; 2001

19. Energy effectiveness
 Energy effectiveness is a therapeutic
approach to planning daily activities and
finding more efficient ways of doing them.
 Achieving a balance between activity and
rest is a central feature
 It also can involve modifying the
environment

20. Over to you…….sharing experiences
 What interventions are carried out in your
practice?
 Group vs. individual?
 Resources used?
 Evaluation/outcomes?

21. Introducing FACETS…..
Fatigue: Applying Cognitive
behavioural
and Energy effectiveness Techniques
to
lifeStyle

22. The research team
 Professor Peter Thomas (Chief Investigator)
Professor of HealthCare Statistics & Epidemiology
School of Health and Social Care, Bournemouth University, UK
 Dr Sarah Thomas
Senior Research Fellow
School of Health and Social Care, Bournemouth University, UK
 Dr Paula Kersten, Dr Rosie Jones (Principal Investigators)
 Dr Charles Hillier, Mrs Alison Nock, Mrs Vicky Slingsby
Dorset MS Service, Poole Hospital NHS Foundation Trust
 Mrs Angela Davies Smith
 Dr Colin Green, Professor Roger Baker, Professor Kate Galvin
 Tim Worner, Geoff Linder (Service users)

23. Contributors
 Ms Felicity Burgess - Recruitment
 Dr Sara Demain - Delivered intervention
 Mrs Caroline Birch - Delivered intervention
 Ms Charlie Ewer-Smith - Delivered intervention
 Dr Jo Kileff - Delivered intervention
 Ms Jen Gash - Delivered intervention
 Mrs Sheila Chartres - Delivered intervention
 And all the participants in the trial.

24. Fatigue treatments - evidence
 Drug treatments work for some but not all
(Sheng et al., 2013)
 Energy effectiveness approaches of
moderate benefit in shorter term (Blikman et
al., 2013)
 Cognitive behavioural therapy (CBT)
shown to be helpful in other conditions
(Chronic Fatigue Syndrome, Rheumatoid
arthritis)

25. Guiding principles
 Blends cognitive behavioural (CB) &
energy effectiveness approaches
 Self-management
 Delivered in groups
 Manualised
 Delivered by OTs, physiotherapists, nurses
etc.
 Easy to roll out in current health services

26. Phase 1
Developing FACETS
Phase 2
Trying out locally
locally Phase 3
3 centre pilot
Phase 4
RCT
Rolling out
FACETS

27. Theoretical underpinnings

28. Self-management
 How a chronic condition impacts upon daily life
and the ways in which people can take greater
control over their condition on a day-to-day
basis
 Self-management programmes can be
specifically designed to reduce the severity of
symptoms and improve confidence,
resourcefulness and self-efficacy.
Source: Department of Health. The expert patient: a new approach to chronic
disease management for the 21st century. London: DoH; 2001

29. Self-efficacy
A person’s confidence in their ability to
accomplish a task or cope with a
challenging situation
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

30. Energy effectiveness approach
 Energy effectiveness is a therapeutic
approach to planning daily activities and
finding more efficient ways of doing them.
 Achieving a balance between activity and
rest is a central feature
 It also can involve modifying the
environment

31. 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.

32. Adapted from Padesky & Greenberger,
1995

33. Cognitive behavioural approach
 Structured
 Working in partnership
 Uses problem solving
 Helps people to gain insights into how they
think, feel and behave
Can help people to explore other ways of
thinking and behaving that might be more
helpful for managing fatigue

34. Objectives of FACETS
 Normalise experience of fatigue
 Use available energy more effectively
 Develop “helpful thinking styles” about
fatigue

35. Structure of FACETS
 Six sessions held weekly, 2 facilitators
 experience of MS and MS-fatigue, group work, CB
approaches
 Closed group (8-10 participants)
 Sessions build upon each other
 1¾ hrs with refreshment break (*1st session =
2 hrs)

36. FACETS resources
 Facilitator manual
 PowerPoint slides
 Participant workbook for each session
 Handouts/signposts to relevant resources

37. − Describe the different types of fatigue
− Normalise the experience of fatigue
− Introduce idea of budgeting energy
− Describe how to establish rest/sleep/
− Describe components of activity
− Introduce toolbox approach to activity
activity routines
Homework: Activity diary & energy
management
− Explain fight/flight response
− Ways of coping with stress
− Introduce CB approach via example
measure
Homework: Rest/activity/sleep planner
− Describe unhelpful thinking styles
− How to challenge unhelpful thoughts
− Introduce concept of core beliefs
Homework: Setting realistic goals
− Pull together programme components
− Plan for setbacks, reframing them as a
Homework: Thought diary
learning experience
Homework: Thought challenge sheet
Homework: ‘Keeping on track’ planner

38. Reflections
 Morning session
 Timing
 Venue important
 Closed group, sessions build upon each
other
 Maximum 10 people, first session involves
significant other
 Funding

39. Our experiences
“It was good to hear real issues face-to-face
and have time/permission to talk about the
whole complex business of MS in a safe and
caring environment. The group helped me
feel relaxed and confident to speak about
anything. I have steered away from “groups”
and found online forums rather depressing -
this was a really positive experience!”

40. FACETS trial - design
–Pragmatic parallel arm multi-centre
randomised controlled trial
–FACETS plus current local practice
–versus
–Current Local Practice (CLP)

41. FACETS trial - aims
PRIMARY
 Does FACETS improve fatigue severity, self-efficacy, and MS-specific
quality of life?
SECONDARY
 Does FACETS improve fatigue impact, mood, general quality of
life, and activity patterns?
 Is it cost-effective?
 What are participants’ experiences? What changes have they
made? What barriers to change were encountered?
Helpful/unhelpful aspects?

42. FACETS trial - eligibility
Inclusion criteria
 Diagnosis of MS
 Significant fatigue (impacting on daily life)
 Ambulatory
Exclusion criteria
 Non-English speaking
 Relapse within past 3 months
 Recently started disease modifying drug or anti-depressants
 Cognitive deficits ruling out group participation
 Under the care of psychiatrist or addiction services

43. FACETS trial - outcomes
FATIGUE
Fatigue Assessment Instrument FAI]
Fatigue Symptom Inventory [FSI]
SELF-EFFICACY
Fatigue Self-Efficacy Scale [FSE]
(control subscale)
QUALITY OF LIFE
MS Impact Scale [MSIS-29]
MO Short-Form 36 [SF-36]
EuroQol 5-Dimensions [EQ-5D-3L]
MOOD
Hospital Anxiety & Depression Scale
[HADS]
Fatigue Management Strategies
Questionnaire (FMSQ)
ActivPAL™ tri-axial accelerometer

44. INCLUSION CRITERIA:
Diagnosis of MS; significant fatigue; ambulatory
Given information pack
Excluded
Ineligible (n=112)
Declined (n=142)
Waiting list (n=34)
Randomised (n=164)
stratified by centre
1 month follow-up (n=75) 94%
FACETS + UC (n=84)
Received ≥4 sessions (n=72)
USUAL CARE (n=80)
1 month follow-up (n=71) 85%
4 month follow-up (n=70) 83% 4 month follow-up (n=74) 93%
12 month follow-up (n=62) 74% 12 month follow-up (n=69) 86%

45. Age
20
30
40
50
60
70
80
40
30
20
10
0
Age (years)
%
Type of MS
50
40
30
20
10
0
progressive
Benign
Relapsing
Secondary
Don't know
Primary
progressive
%
Adapted Patient Determined Disease Steps
1 2 3 4 5 6 7
30
20
10
0
No limitations
on walking
MS
inteferes
Needs
walking aid
%
Years since diagnosis
40
30
20
10
0
<1
1-5
6-10
16-20
11-15
>20
%

46. 15
10
5
0
-5
-10
-15
1 mth 4 mths 12 mths
Fatigue self-efficacy
p<0.001 p=0.048 p=0.09
Mean diff. (95% CI)
0.6
0.4
0.2
0.0
-0.2
-0.4
-0.6
1 mth 4 mths 12 mths
Fatigue Global Severity
p=0.86 p=0.01 p=0.06
Mean diff. (95% CI)
0.4
0.3
0.2
0.1
0.0
-0.1
-0.2
-0.3
-0.4
1 mth 4 mths 12 mths
MSIS-29
p=0.46 p=0.53 p=0.046
Mean diff. (95% CI)

47. Secondary outcomes
Significant Not Significant
SF-36 Vitality (4 mths) Other SF-36 subscales
Fatigue Symptom Inventory
- average fatigue (1 & 4 mths)
- current fatigue (1 mth)
Fatigue Symptom Inventory
- most fatigued
- least fatigued
- interference with activities
Hospital Anxiety and Depression
Scale
ActivPAL™ - energy expenditure

48. 80 78 78 75
71
66 63
59 58 55
49
90
80
70
60
50
40
30
20
10
0
%
Fatigue management strategies
used at 4 months

49. Economic evaluation
 Cost of FACETS £453 per patient (~50% facilitation)
 No significant difference in Quality Adjusted Life Years
(QALYs): FACETS 0.26 v CLP 0.31 (p=0.31)
 Cost of £1,259 per unit reduction in fatigue severity
(or in a more policy-relevant context £2,157 per additional
person
with a clinically significant improvement in fatigue (GFS)).
 No significant difference in health and social care costs
over 3 months: [FACETS £218 v CLP £265]
 Uncertainty around cost-effectiveness

50. Conclusions
 FACETS has small-to-medium effect sizes
 By 1 month follow-up, improved self-efficacy (MS-FSE)
 By 4 months follow-up, reduced fatigue severity
(FSS)
 By 12 months follow-up, improved quality of life
(MSIS-29)
 Inexpensive
 Designed to be easily incorporated into practice

51. Update
 FACETS has been translated into French,
Norwegian, and German
 One year follow-up paper published (BMC
Neurology)

52. Phase 1
Developing FACETS
Phase 2
Trying out locally
locally Phase 3
3 centre pilot
Phase 4
RCT
Rolling out
FACETS

53. Roll out - the manual
 MS Society has supported
design and production of
facilitator manual and
participant materials

54. Roll out - training courses
 MS Society supporting/organising
one day FACETS training courses for
health professionals (HPs)
– Delivered by Alison Nock and Vicky Slingsby
– To date, 123 HPs trained (London, Glasgow,
Manchester, Belfast, Bristol and Bradford)

55. References
Thomas S, Kersten P, Thomas PW. The Multiple Sclerosis-Fatigue Self-Efficacy (MS-FSE) Scale: initial validation.
Clin Rehabil. 2014 Aug 26. DOI: 10.1177/0269215514543702 [Epub ahead of print]
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, Kersten P. Fatigue, FACETS and future directions for fatigue management. Int J Ther Rehabil 2014; 21,
57.
Thomas S, Thomas PW, Kersten P et al., 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 Published Online First: [10 July 2013]
doi:10.1136/jnnp-2012-303816
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.
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 S, Thomas P, Nock V, Slingsby V, Galvin K, Baker R, Moffat N, Hillier C. Development and preliminary
evaluation of a
fatigue management programme for People with multiple sclerosis. Mult Scler 007;13: S7-S273.