Exploring real-time digital supported fatigue monitoring in fatigue management: Perspectives from OTs and brain injury survivors, 2024, Ezekiel et al

[Midnattsol]

Full title: Exploring the usefulness of real-time digitally supported fatigue monitoring in fatigue management: Perspectives from occupational therapists and brain injury survivors

Ezekiel, Leisle; Wilding, Harriet; Dearling, Jeremy; Collett, Johnny; Dawes, Helen

Abstract
Introduction: Persistent fatigue after acquired brain injury (ABI) needs long-term self-management. Self-monitoring supports self-management and informs the use of fatigue management strategies. Using ecological momentary assessment to monitor fatigue offers a data-driven approach to managing fatigue. Aims: To explore the usefulness of self-monitoring fatigue in real-time, using ecological momentary assessment to support self-management, from the perspective of people with ABI and occupational therapists. Methods: People with ABI monitoried their fatigue by wearing a Fitbit and completing six surveys a day on their phone for 6 days. Think aloud and semi-structured interviews elicited views on self-monitoring and the data generated. Transcripts were analysed using reflexive thematic analysis. Results: Four themes were developed from people with ABI ( n = 9): (1) Attending to experience, (2) making sense of data, (3) the relationship between fatigue and activity, (4) implications for daily life. Three themes from occupational therapists ( n = 5): (1) Challenges of using of data, (2) perceived benefits of self-monitoring, (3) viewing data in relation to their understanding of fatigue. Conclusion: Data generated in real-time challenged perspectives on fatigue and fatigue management. These insights may help people with ABI and their clinicians to plan personalised strategies for fatigue management and evaluate its impact on daily living.

Web | DOI | PMC | PDF | British Journal of Occupational Therapy

 

[Jonathan Edwards]

Conclusion: Data generated in real-time challenged perspectives on fatigue and fatigue management.

That is quite an encouraging conclusion - that they found out that things weren't what they expected? From there on I wouldn't know.

 

[Utsikt]

From the OT interviews:

At times therapist did not perceive patterns in the data, and so the data were not seen as useful. At times the data summaries also contradicted therapists understanding of fatigue and so therapists questioned the reliability or validity of the data. Key areas of contradiction centred around self-ratings of energy and fatigue (where participants had scored energy as high whilst scoring their fatigue as high), or where participants described experiencing mental fatigue whilst engaging in physical activity.

Interpreting data in relation to therapists understanding of fatigue. Therapists had differing perspectives of fatigue, and this meant their expectations of the data differed. Two therapists used mindfulness-based approaches in their fatigue interventions and so wanted to know about participant’s mindful engagement in their reported activities. Others asked their service users to report stress levels or other bodily symptoms of fatigue, to better understand the context of activity, rest and fatigue.

Then they go on to talk about fear avoidance and deconditioning in the discussion;

Changes to attentional processes are common following brain injury and may be accompanied by limited self-awareness of deficits (El Husseini et al., 2023; Rabinowitz and Levin, 2014). Hence, attending in the moment to experiences of fatigue and activity may increase awareness of factors that trigger and exacerbate fatigue and support interventions such as activity pacing.

Nevertheless, it is important to note that self-monitoring of fatigue in real time may lead to avoidance and withdrawal, rather than increasing engagement as increased focus on fatigue and potential drivers of fatigue may negatively affect mood states. Hence, it is vital for people with brain injury to have clinical support when initially self-monitoring and interpreting generated data.

Then they want to use it for supporting exercise and activity interventions:

It is noteworthy that the overall experience of fatigue was largely driven by mental rather than physical effort. This information may to useful in supporting exercise and physical activity interventions. Indeed, therapists viewed increasing a patient’s awareness of their fatigue as beneficial and thought they might use such data to raise awareness of fatigue triggers and ineffective coping strategies.

Ironically, just after they point out that your own beliefs might affect how you interpret something:

Similar to Thomas et al., we also found that therapists’ clinical reasoning (as triggered by the data summaries) was shaped by their understanding of fatigue and this affected their interpretation of the data as well as views on what was missing from the data summaries. In our study, the therapists interpretation of data sometimes differed from those of participants with brain injury, particularly around approaches to pacing and relationships between physical activity and mental fatigue. This highlights the necessity for data to be trustworthy and for the clinician to understand the limitations of the data as they draw conclusions (Codella et al., 2018).

 

[Kalliope]

Fear of activity is a focus also in this opinion piece today in a medical newspaper where the paper is used as a reference:

quote:
- We believe that patients can benefit from using this to dare to explore how much they can be active. Many are anxious about being too active for fear of experiencing increased fatigue afterwards. However, we found no significant correlation between higher activity and higher fatigue either the next day or two days later.

Fatigue etter hjerneskade: Veiviser kan gi et mer aktivt liv

Fordi de er usikre på om fysisk aktivitet vil øke symptomene, kan mange med ervervet hjerneskade bli mindre aktive. Nå gir forskning håp om at to enkle grep kan vise hver enkelt hvor mye man kan bevege seg uten å oppleve økt fatigue.

www.dagensmedisin.no

google translation

Fatigue etter hjerneskade: Veiviser kan gi et mer aktivt liv

Fordi de er usikre på om fysisk aktivitet vil øke symptomene, kan mange med ervervet hjerneskade bli mindre aktive. Nå gir forskning håp om at to enkle grep kan vise hver enkelt hvor mye man kan bevege seg uten å oppleve økt fatigue.

www-dagensmedisin-no.translate.goog

 

[Midnattsol]

The no correlation is also the whole problem, we don't always know what causes a crash. Sigh.

 

[rvallee]

At times therapist did not perceive patterns in the data, and so the data were not seen as useful

This is an odd quote, because it's what makes the data useful: it debunks old assumptions. There is this overarching belief in such patterns, it's what's behind this idea that clinicians and therapists can guide patients. But those patterns don't actually exist, and neither do the vast majority of the odd behavioral attributions.

At times the data summaries also contradicted therapists understanding of fatigue and so therapists questioned the reliability or validity of the data. Key areas of contradiction centred around self-ratings of energy and fatigue

Lots of people have told them this the whole time, but they never listen. They're still not listening, they prefer their models over reality.

Therapists had differing perspectives of fatigue, and this meant their expectations of the data differed. Two therapists used mindfulness-based approaches in their fatigue interventions and so wanted to know about participant’s mindful engagement in their reported activities.

You will never notice "mindfulness" in those data. Never. It has zero impact on anything.

Hence, attending in the moment to experiences of fatigue and activity may increase awareness of factors that trigger and exacerbate fatigue and support interventions such as activity pacing.

I have zero idea what "attending in the moment to experiences of fatigue and activity may increase awareness of factors that trigger and exacerbate fatigue" could even refer to. There is no such thing, unfortunately, as the data show. Again patients have told them those things for decades but they never listen.

This highlights the necessity for data to be trustworthy and for the clinician to understand the limitations of the data as they draw conclusions

In the legal profession there is a saying: if you have the facts on your side, pound the facts; if you have the law on your side, pound the law. They prefer to attack the data over accepting that their models were always just fantasy without any basis.

It's moments like this that define real professionals, when they are willing and able to discard failed models. I don't expect it to happen, but reality conflicting with traditional models is not something that will ever slow down. It's obvious that they don't actually understand much, and that they are obvious avoiding it. How ironic.

 

[rvallee]

We believe that patients can benefit from using this to dare to explore how much they can be active. Many are anxious about being too active for fear of experiencing increased fatigue afterwards. However, we found no significant correlation between higher activity and higher fatigue either the next day or two days later.

This is an incredible quote. It captures so much about the problem, and most of the problem is not with the unknown biology or the patients' behavior, but in medical expectations that have been built over decades out of absolutely nothing, and how they are a major reason why we still know nothing about the biology and why clinicians so often incorrectly advise patients to change behavior based on nothing at all. They genuinely seem to think that not finding clear correlation is a good thing, when it's what's most frustrating of all, and how it completely debunks the idea that they are providing a valuable service.

I have never seen a system so perfectly built to fail not only its intended purpose but itself. This is negative self-awareness and introspection. It's stunning in its commitment to failure.