#WeAHPs - Thursday 29th June 2017 8pm (GMT Standard Time)
Post-stroke fatigue: is our understanding optimal?
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Hosted by WeAHPs using #WeAHPs
This chat is guest hosted by @Karen_ThPCU
On Thursday 29th June WeAHPs will be discussing post-stroke fatigue with Karen Thomas, Chartered Physiotherapist and PhD Researcher, based at the University of Cambridge.
This tweetchat will explore the aspects encompassing the physiological and psychological fatigue experienced following stroke. Post-stroke fatigue impacts upon stroke survivors' quality of life, rehabilitation and level of social participation as well as being associated with reduced return to work and increased mortality when itbecomes persistent.
There is no gold standard consistently used definition, outcome measure or treatment approach for this disabling ‘invisible handicap’. To progress within the field we need to know to a far greater degree about both patients and healthcare professionals experiences of fatigue and what measures (if any) are being used when assessing and treating patients.
The tweet-chat will focus on five main areas of discussion:
1. What characterises fatigue following stroke and how does this vary from fatigue in other conditions?
- Consider how we define post-stroke fatigue, its mental and physical elements and the symptoms and experiences patients report dealing with.
2. Is information provision for patients and training at a pre-entry level for healthcare professionals involved in this populations care adequate?
- Think back to before you qualified. Did you get teaching on this niche area? Do we think this is something that should be considered for those going on to work in a stroke rehabilitation setting?
- Are patients given information to understand post-stroke fatigue? At what time point? What form does this information provision take? Is this adequate
3. How is post-stroke fatigue measured and what are the difficulties faced with measurement?
- There are >50 different fatigue measurement scales but none specifically created for fatigue following stroke. What measurements are being used or does assessment follow a different strategy ie discussion and informal questioning? If this is the case how can we track improvements in fatigue? Do broader outcome measures also work for this populations and if not, what problems are faced?
- Despite this being a consistent area of un-met need for stroke survivors, there remains limited high-quality evidence into interventions. In practice, what are clinicians advising and administering to treat fatigue?
- How are other forms of neurological fatigue being treated ie in conditions such as Multiple Sclerosis and Brain Injury?
Pre-chat reading
- Tiredness and fatigue (Stroke Association)
- Fatigue after Acquired Brain Injury: a model to guide clinical management
- Post stroke fatigue: an emerging, critical issue in stroke medicine (Smi Choi-Kwon1 and Jong S. Ki, 2011)
- Experiences of post stroke fatigue: qualitative meta-synthesis (Grethe Eilertsen, Heidi Ormstad & Marit Kirkevold, 2012)
- Mental fatigue - useful list of publications
About our host
Karen Thomas is a Chartered Physiotherapist and PhD Researcher, based at the University of Cambridge. Her research aims to further understanding into the multidimensional biopsychosocial construct of Post-Stroke Fatigue. Having both a clinical and academic background has helped her shape her research path with patients and their families and MDT teams' most pertinent needs in mind.
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#WeAHPs transcript
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@WeAHPs
29 June 2017 20:00
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Good evening ladies and gents welcome to tonight's #weahps |
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@WeAHPs
29 June 2017 20:00
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Tonight we are discussing post stroke fatigue with @Karen_ThCamPCU #weahps |
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@WeAHPs
29 June 2017 20:01
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But first let us know your if you're joining in. Tell us where your from and your profession #hello #weahps |
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@liziophysio1
29 June 2017 20:01
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RT @WeAHPs: Tonight we are discussing post stroke fatigue with @Karen_ThCamPCU #weahps |
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@TJKinrade
29 June 2017 20:03
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@WeAHPs #hello #weahps I'm tuning in from Nottingham, I'm a adult student nurse, with an interest into Karen and her work! |
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@WeAHPs
29 June 2017 20:03
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@TJKinrade Welcome #weahps |
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@Karen_ThPCU
29 June 2017 20:04
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Hi everyone! Looking forward to discussion with you all. I'm a physiotherapist and researcher based in Cambridge hosting tonight #weAHPs |
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@WeAHPs
29 June 2017 20:04
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Now over to @Karen_ThCamPCU for our first question #weahps |
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@Mich_D_Neuro_OT
29 June 2017 20:04
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@WeAHPs #Hello #weahps OT working in HASU and ASU |
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@Karen_ThPCU
29 June 2017 20:06
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Q1. In discussion with a stroke survivor, how would you describe post-stroke fatigue to them? Different to other fatigue? #WeAHPs |
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@WeAHPs
29 June 2017 20:07
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Great to have you with us #weahps https://t.co/fHCoettBJw |
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@ajinjt
29 June 2017 20:07
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@WeAHPs Physiotherapist from Abu Dhabi #hello #WeAHPs |
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@WeAHPs
29 June 2017 20:08
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Hey annie, remember to use #weahps hashtag so we can all follow the conversation https://t.co/lsoiBmUFim |
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@Airedaleahps
29 June 2017 20:08
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RT @WeAHPs: But first let us know your if you're joining in. Tell us where your from and your profession #hello #weahps |
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@Airedaleahps
29 June 2017 20:09
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@WeAHPs Hello it's @SleddingFreya here occupational therapist and service manager @Airedaleahps #weahps |
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@HelenFosterPhys
29 June 2017 20:10
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@Karen_ThCamPCU Would say random tiredness, doesn't necessarily change with sleep or activity #weahps |
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@Karen_ThPCU
29 June 2017 20:10
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Eilertsens 2013 meta analysis is definitely worth a read, considering what characteristics survivors believe they experience #weahps |
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@WeAHPs
29 June 2017 20:11
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@logan_angie hi Angie, great to have you #weahps |
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@Karen_ThPCU
29 June 2017 20:11
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@HelenOwen3 Definitely- and this seems to lead to a feeling of reduced control over the fatigue for the individual #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:11
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@Karen_ThCamPCU #WeAHPs I usually describe fatigue in terms of tiredness, lower energy reserves and "brain fog" with patients. |
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@Karen_ThPCU
29 June 2017 20:15
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@brin1958 DO you remember how it was first described to you when discussed? #WeAHPs |
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@HelenFosterPhys
29 June 2017 20:15
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@Karen_ThCamPCU @Mich_D_Neuro_OT What about when understanding affected? #weahps |
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@ajinjt
29 June 2017 20:15
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@Karen_ThCamPCU @Mich_D_Neuro_OT Guess the ideal word would be tired or laziness. #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:16
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@Karen_ThCamPCU #WeAHPs "Brain fog" has been successful when describing fatigue to both patients and relatives in my experience |
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@TremayneLiz
29 June 2017 20:16
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In acute stroke explain it is very common, overwhelming tiredness not necessarily linked to activity and rest. Explore triggers #weahps |
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@Mich_D_Neuro_OT
29 June 2017 20:16
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@Karen_ThCamPCU #WeAHPs Relatives/ carers can often have difficulty understanding fatigue and how they may impact on fatigue levels |
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@WeAHPs
29 June 2017 20:17
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@ajinjt @Karen_ThCamPCU @Mich_D_Neuro_OT How do patients respond to the word laziness? #weahps |
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@Karen_ThPCU
29 June 2017 20:18
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Q2. How can we assess post-stroke fatigue? Should we consider specific outcome measures or prioritise subjective questioning? #WeAHPs |
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@ajinjt
29 June 2017 20:18
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@WeAHPs @Karen_ThCamPCU @Mich_D_Neuro_OT May be useful in a patient who is quite motivated but lazy to do a session #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:19
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@WeAHPs @ajinjt @Karen_ThCamPCU #WeAHPs Laziness is not a word I've ever used but I'd be interested to know the reaction. |
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@Karen_ThPCU
29 June 2017 20:19
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So now moving on from defining post-stroke fatigue, what is the best way to assess? Do research and clinical experience interlink? #weahps |
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@Karen_ThPCU
29 June 2017 20:20
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Cummings 2016 rv found the Fatigue Severity Scale is most commonly used in research, but is it clinically? #WeAHPs |
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@ais_d
29 June 2017 20:20
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@Mich_D_Neuro_OT @Karen_ThCamPCU #weAHPs so important to have education sessions with family/carers as they often… https://t.co/fsTcvzgsKP |
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@Karen_ThPCU
29 June 2017 20:20
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RT @Mich_D_Neuro_OT: @Karen_ThCamPCU #WeAHPs Relatives/ carers can often have difficulty understanding fatigue and how they may impact on f… |
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@ajinjt
29 June 2017 20:20
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@Karen_ThCamPCU Haven't used any specific measures as such here..but would be interested in knowing more. #WeAHPs |
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@TJKinrade
29 June 2017 20:21
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@WeAHPs @Karen_ThCamPCU It can't be easy to assess, such a subjective element to measure #weAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:21
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@Karen_ThCamPCU #WeAHPs Due to short admission length observational ax and discussion with pts used but am interest… https://t.co/Hezla8M2Wz |
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@logan_angie
29 June 2017 20:21
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@WeAHPs @ajinjt @Karen_ThCamPCU @Mich_D_Neuro_OT #weahps I often hear relatives say their loved one is lazy/not mot… https://t.co/hbSnc7AVtx |
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@Karen_ThPCU
29 June 2017 20:22
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Perhaps due to its multifactorial basis standardised outcome measures and assessment is difficult and individualised ax is better? #WeAHPs |
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@Salaso_
29 June 2017 20:22
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RT @Karen_ThCamPCU: Cummings 2016 rv found the Fatigue Severity Scale is most commonly used in research, but is it clinically? #WeAHPs |
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@TremayneLiz
29 June 2017 20:22
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Important to have subjective and performance measures to capture complexity and components of fatigue, impact on occupation and QOL #weahps |
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@ais_d
29 June 2017 20:24
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@Karen_ThCamPCU #weAHPs been exploring OM but feel we already use lots, usually ask patients & complete ed sesh - w… https://t.co/Urfq4iF5XS |
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@Karen_ThPCU
29 June 2017 20:24
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@TremayneLiz What performance measures have you used? I also think considering coping style is also important to cover? #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:24
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@Karen_ThCamPCU @logan_angie @WeAHPs @ajinjt #WeAHPs I have found fatigue diaries useful with some patients and relatives |
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@ais_d
29 June 2017 20:25
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@logan_angie @WeAHPs @ajinjt @Karen_ThCamPCU @Mich_D_Neuro_OT #weAHPs - yes education with patient and family is so important |
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@ais_d
29 June 2017 20:27
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@Karen_ThCamPCU @TremayneLiz #weAHPs also teaching fatigue management strategies - pacing, resting, graded engagement in #valuedoccupations |
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@logan_angie
29 June 2017 20:27
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@Karen_ThCamPCU #weahps Exhaustion, so tired that you can't do that things you want to do and can't think straight; brain fog. |
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@HelenFosterPhys
29 June 2017 20:28
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@Karen_ThCamPCU @Jo__Howe Does presentation seem similar to their normal fatigue? #weahps |
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@TremayneLiz
29 June 2017 20:29
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In practice we discuss, look at VAS but would like to consider better outcome #weahps |
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@ais_d
29 June 2017 20:30
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@Karen_ThCamPCU @TremayneLiz #weAHPs absolutely - one size does not fit all! @CornwallOT @theRCOT @RCHTWeCare |
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@Mich_D_Neuro_OT
29 June 2017 20:31
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@Karen_ThCamPCU @Jo__Howe #WeAHPs Useful to explore helpful and unhelpful behaviours and coping strategies as we re… https://t.co/ZfEqhaH4yZ |
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@TremayneLiz
29 June 2017 20:31
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Wu's conceptual model of fatigue helpful and agree needs to be individually taylored as triggers and components different #weahps |
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@Karen_ThPCU
29 June 2017 20:31
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Q3. More specifically, what challenges occur when ax PSF? Can the multifactorial basis create difficulties individualising care? #WeAHPs |
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@Karen_ThPCU
29 June 2017 20:32
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As @ajinjt pointed out- language barriers are a big issue especially with the complexity of post stroke fatigue #WeAHPs |
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@DrJoHowe
29 June 2017 20:33
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@Mich_D_Neuro_OT @Karen_ThCamPCU #weAHPs Defcoping strategies, personality traits, bloody minded attitude- helpful… https://t.co/WvjjKAslOB |
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@Mich_D_Neuro_OT
29 June 2017 20:34
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@TremayneLiz #WeAHPs Just looked this up and looks really interesting and helpful! |
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@ajinjt
29 June 2017 20:34
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@Karen_ThCamPCU What about complex stroke cases with aphasia etc difficulty in assessment. #WeAHPs |
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@HelenFosterPhys
29 June 2017 20:34
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@Karen_ThCamPCU Part of person centred care? As with any other need #weahps |
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@TremayneLiz
29 June 2017 20:35
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Think nature and components of fatigue changes along stroke journey so challenges vary and input needs to account for this #weahps |
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@Airedaleahps
29 June 2017 20:36
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RT @Mich_D_Neuro_OT: @Karen_ThCamPCU #WeAHPs "Brain fog" has been successful when describing fatigue to both patients and relatives in my e… |
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@Karen_ThPCU
29 June 2017 20:37
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@HelenOwen3 Which may make a less structured approach to ax and rx appropriate for post-stroke fatigue? #WeAHPs |
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@ajinjt
29 June 2017 20:37
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@Karen_ThCamPCU So practically fatigue assessment and consideration would be for responsive and cognitive able patients. #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:38
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@Karen_ThCamPCU @ajinjt #WeAHPs It's a challenge in Acute to use standardised assessment for all impairments/ symp… https://t.co/HPQ260EFl8 |
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@logan_angie
29 June 2017 20:39
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@Karen_ThCamPCU #weahps Important to consider impact of communication & cognition. Many patients experience both wh… https://t.co/Kb7X8tHkSC |
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@TremayneLiz
29 June 2017 20:39
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@ajinjt @Karen_ThCamPCU I agree this is important to consider and involve SLT #weahps |
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@Mich_D_Neuro_OT
29 June 2017 20:39
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@ajinjt @Karen_ThCamPCU #WeAHPs Not necessarily. Fatigue diary for relatives and professionals- can still then id… https://t.co/TbpyIUukBf |
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@Karen_ThPCU
29 June 2017 20:40
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@logan_angie I have also experienced where fatigue has been missed as difficulties thought to be due to other causes ie depression #WeAHPs |
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@TremayneLiz
29 June 2017 20:40
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@Karen_ThCamPCU agree it is a challenge #weahps |
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@Karen_ThPCU
29 June 2017 20:40
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RT @Mich_D_Neuro_OT: @Karen_ThCamPCU @ajinjt #WeAHPs It's a challenge in Acute to use standardised assessment for all impairments/ symptom… |
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@DrJoHowe
29 June 2017 20:40
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@Mich_D_Neuro_OT @ajinjt @Karen_ThCamPCU #WeAHPs agree family can provide valuable info if they know you want it |
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@logan_angie
29 June 2017 20:41
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@Karen_ThCamPCU Cognitive and communication impairment are challenging #weAHPs but still vital to Ax |
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@ais_d
29 June 2017 20:41
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@TremayneLiz @ajinjt @Karen_ThCamPCU #weAHPs definitely need an #MDT #AHP approach to managing post-stroke fatigue… https://t.co/kJj5JxBQhP |
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@Karen_ThPCU
29 June 2017 20:41
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@Jo__Howe @Mich_D_Neuro_OT @ajinjt I agree. Important to ensure it is followed up past this assessment too! #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:41
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@Karen_ThCamPCU @logan_angie #WeAHPs This discussion is making me wonder how often we are mistaking symptoms of fatigue for other things |
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@Karen_ThPCU
29 June 2017 20:41
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Q4. Are clinicians/therapists receiving training re post-stroke fatigue? At what stage and is it enough to enable high quality care? #WeAHPs |
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@ais_d
29 June 2017 20:41
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RT @logan_angie: @Karen_ThCamPCU Cognitive and communication impairment are challenging #weAHPs but still vital to Ax |
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@DrJoHowe
29 June 2017 20:42
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@Karen_ThCamPCU @Mich_D_Neuro_OT @ajinjt It is but currently there is no mandate for that #weahps |
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@ajinjt
29 June 2017 20:42
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@Mich_D_Neuro_OT @Karen_ThCamPCU @logan_angie Rightly said.. #WeAHPs |
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@TremayneLiz
29 June 2017 20:43
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@ais_d @ajinjt @Karen_ThCamPCU @LindaElsey @carrie_biddle @RCHTWeCare Agree, strong MDT involvement required for holistic approach #weahps |
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@HelenFosterPhys
29 June 2017 20:43
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@Karen_ThCamPCU Not really - would be really interesting to learn more about overcoming barriers it creates #weahps |
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@ajinjt
29 June 2017 20:44
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@Karen_ThCamPCU I don't think a majority of 99% of therapists haven't got any training including myself #WeAHPs |
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@ais_d
29 June 2017 20:44
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@Karen_ThCamPCU #weAHPs not really - very reliant on culture within team & self-directed learning - lucky to have… https://t.co/v5I3kKPpPD |
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@DrJoHowe
29 June 2017 20:44
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@HelenOwen3 @Karen_ThCamPCU Chat to survivors they will tell you - in their words. V diverse & diff presentation for each person #weahps |
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@Karen_ThPCU
29 June 2017 20:44
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From talking to AHPs it seems training and discussion occurs once treating the patient group? #WeAHPs |
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@Mich_D_Neuro_OT
29 June 2017 20:45
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@Karen_ThCamPCU #WeAHPs Limited training at Uni - mostly pacing. Limited training within the workplace. |
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@DrJoHowe
29 June 2017 20:45
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@Karen_ThCamPCU @Mich_D_Neuro_OT @logan_angie #WeAHPs its tough to find the balance |
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@Mich_D_Neuro_OT
29 June 2017 20:46
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@Karen_ThCamPCU #WeAHPs July's CPD session at work is about Fatigue Management - identifed as a major learning need for the service! |
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@DrJoHowe
29 June 2017 20:46
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#weAHPs often stroke survivors report background noise affects their fatigue, TV Radio etc |
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@TremayneLiz
29 June 2017 20:46
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@Karen_ThCamPCU We do not have specific training and is a gap in Stroke knowledge and skills framework #weahps |
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@Karen_ThPCU
29 June 2017 20:46
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Where would more training be of use? It could be argued pre-registration teaching may not be used by many so best once in workplace? #weahps |
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@Karen_ThPCU
29 June 2017 20:46
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RT @TremayneLiz: @Karen_ThCamPCU We do not have specific training and is a gap in Stroke knowledge and skills framework #weahps |
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@Mich_D_Neuro_OT
29 June 2017 20:47
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@Karen_ThCamPCU #WeAHPs Reactive to the presentation of fatigue - should we be more proactive in taking steps to pr… https://t.co/BojAZvJf5d |
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@ais_d
29 June 2017 20:47
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One to watch out for #weAHPs #OTalk @CornwallOT @cornwall_ahps https://t.co/wfaVd4on4w |
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@ais_d
29 June 2017 20:48
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@Karen_ThCamPCU I think workplace is best or training once in workplace #weAHPs too much to cover in pre-reg courses |
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@Karen_ThPCU
29 June 2017 20:48
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@Mich_D_Neuro_OT Are you thinking putting steps in place immediately after stroke as opposed to at 6 month ax for example? #WeAHPs |
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@logan_angie
29 June 2017 20:49
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RT @TremayneLiz: @Karen_ThCamPCU We do not have specific training and is a gap in Stroke knowledge and skills framework #weahps |
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@Mich_D_Neuro_OT
29 June 2017 20:50
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@Karen_ThCamPCU #WeAHPs Yes - esp in ASU - more considerate timetabling with rest periods and increased education. |
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@Karen_ThPCU
29 June 2017 20:50
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Q5. Finally, what advice and/or rx have you given or would you clinically reason for post-stroke fatigue? Was it effective? #WeAHPs |
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@Airedaleahps
29 June 2017 20:50
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RT @Mich_D_Neuro_OT: @Karen_ThCamPCU #WeAHPs Reactive to the presentation of fatigue - should we be more proactive in taking steps to preve… |
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@DrJoHowe
29 June 2017 20:50
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@ais_d @Mich_D_Neuro_OT @Karen_ThCamPCU #weAHPs absolutely from day 1 - its tough to explain as its diff from being… https://t.co/5LWPvlADqT |
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@Karen_ThPCU
29 June 2017 20:51
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@Jo__Howe @ais_d @Mich_D_Neuro_OT Also important to ensure survivors are gaining the most from their therapy input #weahps |
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@DrJoHowe
29 June 2017 20:51
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@Karen_ThCamPCU #weAHPs Pacing is the best advice I have been given. Listening to your body, recognising the warnin… https://t.co/Snff2wcTUu |
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@logan_angie
29 June 2017 20:51
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@TremayneLiz @Karen_ThCamPCU Agree #weAHPs we need robust evidence to base our knowledge & training on to facilitate patient benefit. |
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@TremayneLiz
29 June 2017 20:52
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@ais_d @Karen_ThCamPCU Agree, needs to be in workplace #weahps |
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@Mich_D_Neuro_OT
29 June 2017 20:54
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@Karen_ThCamPCU #WeAHPs Learn to recognise signs in the early stages of fatigue to enable action and rest before it gets too much/ bad |
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@HelenFosterPhys
29 June 2017 20:54
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RT @Jo__Howe: @Karen_ThCamPCU #weAHPs Pacing is the best advice I have been given. Listening to your body, recognising the warning signs of… |
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@DrJoHowe
29 June 2017 20:54
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#weAHPs Ask me - I suffer with neuro fatigue - still managing 20 years later. This is a life long battle, that message needs to get across |
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@Karen_ThPCU
29 June 2017 20:55
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Exercise programmes, education and mindfulness all tried but not found to be significant or robus evidence #weahps |
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@Karen_ThPCU
29 June 2017 20:55
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RT @Jo__Howe: #weAHPs Ask me - I suffer with neuro fatigue - still managing 20 years later. This is a life long battle, that message needs… |
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@Karen_ThPCU
29 June 2017 20:56
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@Mich_D_Neuro_OT Which I think applies both to us as therapists and also to the patient- self management important here #weahps |
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@DrJoHowe
29 June 2017 20:57
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@logan_angie @Karen_ThCamPCU @ais_d #weAHPs relatives find it very tough and don't understand, "you were ok yesterday..." |
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@logan_angie
29 June 2017 20:57
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RT @Jo__Howe: #weAHPs Ask me - I suffer with neuro fatigue - still managing 20 years later. This is a life long battle, that message needs… |
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@WeAHPs
29 June 2017 20:57
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Really great advice being shared in the last few minutes of tonight's #weahps https://t.co/oZSNZney5A |
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@DrJoHowe
29 June 2017 20:59
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#weAHPs Honestly think fatigue management goes hand in hand with adjustment 2new life - Personally feel Psych is KEY to unlock understanding |
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