A roadmap for research in post-stroke fatigue: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable

So after 13 years you finally decided to do something on fatigue. Good to know there are NO leaders anywhere in stroke!   It would be great if you could at least factually pin down the rate of occurrence!  Proof of massive incompetency in all of stroke!

My doctor just said I needed to get more cardiovascularly fit. He never tested me on that. 3 years post stroke at a physical I had a resting heart rate of 54 at age 53, level of an athlete. That doctor asked what exercises I was doing, 'I've done no exercises for the past 3 years'. That fitness did nothing to stop my fatigue.

• post stroke fatigue (25 posts to January 2018) 

• mental fatigue (4 posts to December 2012)

• 70% stroke fatigue (15posts to April 2017)

• 40% fatigue (9 posts to September 2017)

• 50% stroke fatigue (13 posts to March 2017)

• cognitive fatigue (1 post to September 2017)

• fatigue (149 posts to September 2010)

A roadmap for research in post-stroke fatigue: Consensus-based core recommendations from the third Stroke Recovery and Rehabilitation Roundtable

Coralie English https://orcid.org/0000-0001-5910-7927 Coralie.English@newcastle.edu.au, Dawn B Simpson https://orcid.org/0000-0002-9386-4830, […], and Gillian Mead https://orcid.org/0000-0001-7494-2023+14View all authors and affiliations

OnlineFirst

https://doi.org/10.1177/17474930231189135

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  • Introduction
  • Methods
  • Results
  • Discussion
  • Conclusion
  • Acknowledgments
  • Declaration of conflicting interests
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Abstract

Rationale:

Fatigue affects almost half of all people living with stroke. Stroke survivors rank understanding fatigue and how to reduce it as one of the highest research priorities.

Methods:

We convened an interdisciplinary, international group of clinical and pre-clinical researchers and lived experience experts. We identified four priority areas: (1) best measurement tools for research, (2) clinical identification of fatigue and potentially modifiable causes, (3) promising interventions and recommendations for future trials, and (4) possible biological mechanisms of fatigue. Cross-cutting themes were aphasia and the voice of people with lived experience. Working parties were formed and structured consensus building processes were followed.

Results:

We present 20 recommendations covering outcome measures for research, development, and testing of new interventions and priority areas for future research on the biology of post-stroke fatigue. We developed and recommend the use of the Stroke Fatigue Clinical Assessment Tool.

Conclusions:

By synthesizing current knowledge in post-stroke fatigue across clinical and pre-clinical fields, our work provides a roadmap for future research into post-stroke fatigue.

Introduction

One in two stroke survivors experience post-stroke fatigue (pooled prevalence estimate 47% (95% CI = 43–50%)).¹ Fatigue is a significant and disabling condition in its own right and is a significant barrier to engaging in rehabilitation and other activities that promote recovery. Despite its prevalence and impact, a recent systematic review of 200 stroke clinical guidelines found no strong recommendations for fatigue prevention or management.² Fatigue is a critical unmet need which stroke survivors identify as a high-priority research area.³ Therefore, the International Stroke Recovery and Research Alliance selected post-stroke fatigue as a focus topic of their 3rd Stroke Recovery and Rehabilitation Roundtable (SRRR).

Post-stroke fatigue is not merely “tiredness,” nor simply physical deconditioning; some people have post-stroke fatigue despite high fitness levels.⁴ Post-stroke fatigue is not always associated with effort, nor always relieved by rest. Superficially, fatigue can seem like depression or apathy, and it may co-present with both, but is distinct. For the purposes of this work, we undertook a process of literature reviews, expert consensus, and engagement with people with lived experience of stroke to define to define post-stroke fatigue as:

. . . a feeling of exhaustion, weariness or lack of energy that can be overwhelming, and which can involve physical, emotional, cognitive and perceptual contributors, which is not relieved by rest and affects a person’s daily life.

Despite the high prevalence and burden of post-stroke fatigue, research is limited. Cohorts and assessment tools vary, making pooling data and systematic analysis difficult. Intervention trials are mostly underpowered and inconclusive. Few studies include participants with a speech-language disorder, and fewer have explored the relationship between fatigue and aphasia. Yet some hypothesize a bidirectional relationship⁵ given the large effort required to understand and/or produce language.

Clearly, post-stroke fatigue is a multi-faceted condition. An abundance of biopsychosocial factors are associated with fatigue,⁶ but causal relationships remain unclear, and there is overlap between depression and fatigue. Fatigue may predispose the development of depression, and fatigue can be a symptom of depression,⁷ but the selective efficacy of fluoxetine on depression and not fatigue⁸ suggests that they can be distinct. Fatigue likely hampers engagement in productive and meaningful activities, and elevates risk of social isolation and its secondary effects.

The overarching aim of this Roundtable was to bring together current knowledge of post-stroke fatigue based on best available evidence from multidisciplinary perspectives (clinical, pre-clinical, and lived experience), identify key knowledge gaps, and provide a roadmap for future research.

 

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