Dorset MS Service

Understanding fatigue and an introduction

to

the FACETS programmeAlison Nock, Vicky Slingsby, Occupational Therapists,

Dorset MS Service, Poole Hospital NHS Foundation Trust

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

Fatigue - invisible

Fatigue - challenges

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”

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 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

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

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)

….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

Fatigue is

identified as

a significant

problem

Multiple SclerosisPrimary Fatigue

Secondary Fatigue

Normal fatigue

EnvironmentPhysical

Social

Institutional

Cultural

Psychological

healthAnxiety

Stress

Depression

Other

Sleep

disordersPrimary

Secondary

Physical

healthComorbid

conditions

Drug side

effects

From MSC 1998

Primary fatigue

Secondary fatigue

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

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)

The ‘boom-and-bust’ pattern

‘Bad’ day

Activity

Time

‘Good’ day

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

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

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

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

Over to you…….sharing experiences

What interventions are carried out in your practice?

Group vs. individual?

Resources used?

Evaluation/outcomes?

Introducing FACETS…..

Fatigue: Applying Cognitive

behavioural

and Energy effectiveness Techniques

to

lifeStyle

The research team

Professor Peter Thomas (Chief Investigator)Professor of HealthCare Statistics & Epidemiology School of Health and Social Care, Bournemouth University, UK

Dr Sarah ThomasSenior Research FellowSchool of Health and Social Care, Bournemouth University, UK

Dr Paula Kersten, Dr Rosie Jones (Principal Investigators)

Dr Charles Hillier, Mrs Alison Nock, Mrs Vicky SlingsbyDorset 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)

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.

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)

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

Phase 1

Developing FACETS

Phase 2

Trying out locally

locally Phase 3

3 centre pilot

Phase 4

RCT

Rolling out

FACETS

Theoretical underpinnings

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

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 Ican’t beat it, I can manage it

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

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.

Adapted from Padesky & Greenberger,

1995

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

Objectives of FACETS

Normalise experience of fatigue

Use available energy more effectively

Develop “helpful thinking styles” about

fatigue

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)

FACETS resources

Facilitator manual

PowerPoint slides

Participant workbook for each session

Handouts/signposts to relevant resources

− Describe the different types of fatigue

− Normalise the experience of fatigue

Homework: Activity diary & energy measure

− Introduce idea of budgeting energy− Describe how to establish rest/sleep/

activity routines

Homework: Rest/activity/sleep planner

− Describe components of activity− Introduce toolbox approach to activity

management

Homework: Setting realistic goals

− Explain fight/flight response− Ways of coping with stress− Introduce CB approach via example

Homework: Thought diary

− Describe unhelpful thinking styles− How to challenge unhelpful thoughts− Introduce concept of core beliefs

Homework: Thought challenge sheet

− Pull together programme components− Plan for setbacks, reframing them as a

learning experience

Homework: ‘Keeping on track’ planner

Reflections

Morning session

Timing

Venue important

Closed group, sessions build upon each

other

Maximum 10 people, first session involves

significant other

Funding

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!”

FACETS trial - design

–Pragmatic parallel arm multi-centre

randomised controlled trial

–FACETS plus current local practice

–versus

–Current Local Practice (CLP)

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?

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

FACETS trial - outcomes

FATIGUEFatigue Assessment Instrument FAI]Fatigue Symptom Inventory [FSI]

SELF-EFFICACYFatigue Self-Efficacy Scale [FSE](control subscale)

QUALITY OF LIFEMS Impact Scale [MSIS-29]MO Short-Form 36 [SF-36]EuroQol 5-Dimensions [EQ-5D-3L]

MOODHospital Anxiety & Depression Scale [HADS]

Fatigue Management Strategies

Questionnaire (FMSQ)ActivPAL™ tri-axial accelerometer

1 month follow-up (n=75) 94%

Given information pack

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%

ExcludedIneligible (n=112)Declined (n=142)

Waiting list (n=34)

12 month follow-up (n=62) 74% 12 month follow-up (n=69) 86%

Randomised (n=164)stratified by centre

INCLUSION CRITERIA:

Diagnosis of MS; significant fatigue; ambulatory

Age

20 30 40 50 60 70 80

0

10

20

30

40

Age (years)

%

Type of MS

0

10

20

30

40

50

Benig

n

Rela

psin

g

Seco

ndary

pro

gre

ssiv

e

Do

n't

kno

w

Prim

ary

pro

gre

ssiv

e

%

Adapted Patient Determined Disease Steps

1 2 3 4 5 6 70

10

20

30

No limitationson walking

MSinteferes

Needswalking aid

%

Years since diagnosis

0

10

20

30

40

<1 1-5 6-1011-15

16-20>20

%

-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)

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

80 78 78 7571

66 6359 58 55

49

0

10

20

30

40

50

60

70

80

90

%Fatigue management strategies

used at 4 months

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

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

Update

FACETS has been translated into French,

Norwegian, and German

One year follow-up paper published (BMC

Neurology)

Phase 1

Developing FACETS

Phase 2

Trying out locally

locally Phase 3

3 centre pilot

Phase 4

RCT

Rolling out

FACETS

Roll out - the manual

MS Society has supported design and production of facilitator manual and participant materials

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)

ReferencesThomas 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.Oneyear follow-up of a pragmatic multi-centre randomised controlled trial of a group-based fatigue managementprogramme (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 toassess the effectiveness and cost-effectiveness of a group-based fatigue management programme (FACETS) forpeople 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.

Thomas PW, Thomas S, Hillier C, Galvin K, Baker R. Psychological interventions for multiple sclerosis. Cochrane