(Fatigue After Stroke Education) - University of...

The FASE Study

(Fatigue After Stroke Education)

Liz Tremayne

Clinical Lead Occupational Therapist

liz.tremayne-ward@nhs.net.

@TremayneLiz

Aims

Understanding fatigue from a stroke survivors’ perspective

Stroke survivors’ current experience of fatigue education

Stroke survivors’ perceptions of what fatigue education could include

Rationale for study

Barrier to rehabilitation 1, 2,3

Prevalence of fatigue 1,4,5

Significance of fatigue 6,7

Mortality and morbidity 4,7,8.9.10

Evidence base and Guidelines

Evidence base 12,13,14,15

RCP Stroke Guidelines 16

Inconsistency in education 7,

17, 18,19, 20, 21,

FASE STUDY

Qualitative study

Single center for recruitment

Inclusion criteria

Sample demographics

Data collection and analysis

Face to face interviews of 10 stroke survivors

Thematic analysis

Implications for practice

Themes

Acceptability and

adaptability

The

individual

and diverse

nature of

fatigue

Variability

of stroke

survivor

education

The role of

stroke

services

Overarching

Theme

Theme

Acceptability and adaptability

Mechanism of how stroke survivors cope with PSF

“I think the main thing is accepting what happened because unless you accept it you can’t necessarily deal with it. By talking about fatigue it makes it clearer. You understand and accepting it more.”

Acceptability definition

Adaptability definition

Variability of acceptance and adaptability

“At the moment we have had to make some changes and we have accepted it.”

“It’s too much and I just give up. I think just don’t bother - it’s easier.”

Factorsaffecting acceptability and adaptability

Invisibility and legitimacy

Knowledge and acknowledgement

of PSF

Coping skills

Values and beliefs - Self expectation

Previous coping strategies

Adjustment of role/responsibilities

Family and carers support

Expectations of others

The individual and diverse nature of fatigue

The experience of

fatigue

Interactive nature of fatigue

Causes of fatigue

Predictability and

variability

Invisibility of fatigue

Interactive nature of fatigue

“Everything has become harderand takes a lot more effort like thewalking, talking and thinking. Itjust tires me out and makeseverything worse, like when I’mtired the walking, talking andthinking is worse. It all interacts”.

Fatigue

Impact of

Fatigue

Daily activities

Work / Leisure

Social IntegrationTherapy

Mood

Participant Quotes

“Where as before I could keep going, ran

the house and everything… not now,

family have to help me… and that’s hard…

having to ask for help… putting more on

them and feeling a bit useless.”

“I can’t go out so much in the evenings as

I get too tired… or do the social things like

going out with mates as I can never last

long enough.”

“You’re angry inside that you’re not the

person you were and momentarily you

wonder if you’re ever going to be back

completely as you were before this

happened or whether this is going to go

on.”

Variability of education

Assessment

Nature and consistency of education provided

Participant quotes

“Stroke Association gave me

information. It’s helped me by

telling me that it’s normal, that’s

a big part of it.”

“The therapist is working on

getting me back into a routine,

shows me a way of making

things more simple…

monitoring my tiredness and

resting.”

“They warned me but it was

quite quick and just a warning

really. The leaflet gives a bit

more information and some

general tips but a lot doesn’t

really apply to me or my

situation and doesn’t help me

cope with it.”

Variability of education

Lack of education within hospital

Acknowledgement by MDT.

“I was getting on well at

the hospital and then

suddenly I was at home

and I didn’t know what to

do. When you come out of

hospital, nobody’s been or

anything”

“I think they should have

discussed tiredness with

us and that it might be a

problem, so we could

understand and plan for it,

rather than not know and

wonder why everything

seemed really hard.”

The role of stroke services

• Stroke services responsibility

• Staff training and education

• A team approach

• Sufficient staffing

“Having all of the people within stroke all working together.”

What do Stroke Survivors recommend?

Fatigue Assessment

Social, physical and cultural environment

Occupational demands and routines

Stroke survivor

• Factors that exacerbate or maintain fatigue

• Factors which mediate fatigue

• Essential occupational demands

• Flexibility for adaptation

• Fatigue severity and pattern.

• Triggers and warning signs

• Character

• Previous coping skills

• Capacity for education

Core fatigue education

Knowledge of fatigue

Impact of fatigue

Triggers and warning signs

Strategies to monitor fatigue

Family education

Core fatigue strategies

Planning

Pacing

Prioritizing

Energy conservation

Graded activity

Sleep hygiene

Tailoring of education

Timing

Varying verbal, written and practical support

Format

Duration

Intensity

Context

Individualized strategies

Future Study

Increase sample and sites

Clinician and carer perspectives of fatigue education

Develop a model of fatigue education

Feasibility trial of PSF education

Study Support

Questions

Email: liz.tremayne-ward@nhs.net

@TremayneLiz

References1. Van Eijsden. J.M., Lambert Van de Port, I.G., Visser – Meiley, J.M.A., Kwakkel, G. (2012)

‘Post stroke Fatigue: Who Is at Risk for an Increase in Fatigue?’ Stroke Research and Treatment, Article ID 863978,doi:10.1155/2012/863978

2. Lerdal, A., Bakken, L. N., Kouwenhoven, S. E., Pedersen, G., Kirkevold, M., Finset, A., Kim, H. S., Lerdal, A., Bakken, L. N., Kouwenhoven, S. E., Pedersen, G., Kirkevold, M., Finset, A. & Kim, H. S. (2009) 'Poststroke fatigue--a review'. Journal of Pain & Symptom Management, 38 (6), pp. 928-949.

3. Barker-Collo, S., Feigin, V.L. & Dudley, M. (2007) ‘Post-stroke fatigue- where is the evidence to guide practice?’ The New Zealand Medical Journal, 120 (1264), pp. 2780.

4. De Groot, M.H., Phillips, S.J. & Eskes, G.A. (2003) ‘Fatigue associated with stroke and other neurological conditions: Implications for stroke rehabilitation’. Archives of Physical Medicine & Rehabilitation, 84 (11), pp. 1714- 1728.

5. Hinkle, J.L., Becker, K.J., Kim, J.S., Choi – Kwon, S., Saban, K.L., McNair, N., Mead, G.E. (2017) ‘Post stroke fatigue: Emerging evidence and Approaches to Management. A Scientific Statement for Healthcare Professionals from American Heart Association’. Stroke, 48 (7), pp. E159-170.

6. McKevitt, C., Fudge, N., Redfern, J., Sheldenkar, A., Crichton, S., Rudd, A.R., Forster, A., Young, J., Nazareth, I., Silver, L.E., Rothwell, P.M, Wolf, C.D. (2011) ‘ Self- reporting long term needs after stroke’. Stroke, 42 (5), pp. 1398-1403.

References7. Pollock, A., George, B., Fenton, M., & Firkins, L. (2014) ‘Top 10 research priorities relating to life after

stroke – consensus from stroke survivors, caregivers, and health professionals’. International Journal of Stroke, 9 (3), pp. 313-320.

8. Duncan, F., Wu, S., Mead, G. E. (2012) 'Frequency and natural history of fatigue after stroke: A systematic review of longitudinal studies'. Journal of Psychosomatic Research, 73 (1), pp. 18-27.

9. Kutlubaev, M. A., Duncan, F.H., Mead, G.E. (2012) ‘Biological correlates of post- stroke fatigue: a systematic review’. Acta Neurologica Scandinavica, 125 (4), pp :219– 227. doi: 10.1111/j.1600-0404.2011.01618.x.

10. Lagogianni, C., Thomas, S., Lincoln, N. (2018) ‘ Examining the relationship between fatigue and cognition after stroke: A systematic review. Neuropsychological Rehabilitation, 28 (1), pp. 57- 116.

11. Wu, S., Kutlubeav, M. A., Chun, H.Y.Y., Cowey, E., Pollock, A., Macleod, M.R., Dennis, M., Keane, E., Sharpe, M., Mead, G.E. (2015b) ‘Interventions for post stroke fatigue’. The Cochrane Database of Systematic Reviews, (7), pp CD007030.

12. Wu, S., Chalder, T., Anderson, K.E., Gillespie, D.C., Macleod, M.R. & Mead, G.E. (2017) ‘Development a psychological intervention for fatigue after stroke’. PLos ONE, 12 (8), pp. e0183286.

13. Clarke, A., Barker- Collo, S.L., Feigin, U.L. (2012) ‘Post stroke Fatigue: Does group education make a difference? A randomised pilot trial’. Topics in Stoke Rehabilitation, 19(1), pp. 32-39.

14. Johansson, B., Bjuhr, H., Ronnback, L. (2014) ‘Evaluation of an advanced mindfulness programme following a mindfulness-based stress reduction programme for participants suffering from mental fatigue after acquired brain injury’. Brain Injury, 28 (5-6), pp. 573.

References15. Hofer, H., Holtforth, M.G., Luthy, F., Frischkrect, E., Znoj, H., Muri, R.M. (2014) ‘ The Potential of a

Mindfulness- Enhanced Integrative Neuro-Psychotherapy Program for Treating Fatigue Following Stroke: A Preliminary Study. Mindfulness, 5 (2), pp. 192-199.

16. Intercollegiate Stroke Working Party. (2016) National clinical guidelines for stroke. 5th edition. London: Royal College of Physicians.

17. Flinn, N. A., Stube, J. E. (2010 'Post-stroke fatigue: qualitative study of three focus groups'. Occupational Therapy International, 17 (2), pp. 81-91.

18. Drummond, A.E.R., Worthington, E., Hawkins, L., Nadina, L. (2017) ‘The day to day experiences of people with fatigue after stroke: Results from the Nottingham Fatigue After Stroke study’. International Journal of Therapy and Rehabilitation, 24 (10), pp. 449-455.

19. Eilersten, G., Ormstad, H., and Kirkevold, M. (2013). ‘Experiences of post stroke fatigue: qualitative meta-synthesis’. Journal of Advanced Nursing, 69 (3), pp. 514–525.

20. Bendz, M. (2003) 'The first year of rehabilitation after a stroke -- from two perspectives'. Scandinavian Journal of Caring Sciences, 17 (3), pp. 215-222.

21. Kutlubaev, M.A., Mead, G.E., Lerdal, A. (2015) ‘Fatigue after stroke- perspectives and future directions’. International Journal of Stroke, 10 (3), pp. 280-281.

22. Lynch, J., Mead, G., Greig, C., Young, A., Lewis, S., Sharpe, M. (2007) ‘ Fatigue after stroke: The development and evaluation of a case definition. Journal of Psychosomatic Research, 63 (5), pp. 539-544.

23. Wu, S., Mead, G., Macleod, M., Chalder, T. (2015a) ‘Model of Understanding Fatigue After Stroke’. Stroke, 46 (3), pp. 893-898.