21 July 2020
Four ways to better understand fatigue
Despite the significance of fatigue for patients living with chronic health conditions, the disorder is often overlooked. Interested in the patient perspective, we asked how they experience and manage their conditions as well as what they are looking for in an ideal treatment. Read on for the key take-aways from our study.
- Fatigue affects people with a range of health conditions. The research shows the complex clinical history of people with fatigue. Many experience more than one clinical condition in their lifetime, and these conditions are chronic and long lasting. The more complex the disease presentation, the more challenging people find it to identify treatments and successfully manage their fatigue.
- Fatigue itself presents as complex and multifaceted and changes over time. Our research shows that fatigue affects a range of functions: mood, anxiety, pain, movement and muscular function, sleep, cognition, and sensation and subjective tiredness. Often fatigue affects more than one of these areas at once. Fatigue leads to impairments in many aspects of daily life, including in work and education, managing daily demands, the ability to socialise and engage in enjoyable activities.
- Fatigue is associated with a similar array of experiences and activities across disease categories, but at varying levels of impairment. Experiences of fatigue interacted to an extent with underlying chronic health conditions.
- People actively manage their fatigue through a range of medical and non-medical approaches, but many are not satisfied with existing treatments. People are motivated to try a range of different approaches. However, they often describe problems with low efficacy and side effects. They note that medications used to treat fatigue or chronic health conditions can exacerbate sleep problems and worsen fatigue. Cost limitations also constrain people’s access to treatment, as do problems with mobility restriction and pain. People report that support is limited, either because clinicians and patients themselves view fatigue secondary to underlying health conditions, because it is non-specific, or not important enough to warrant further support.
How can we apply technology to better assess fatigue given the study findings?
Improving accessibilty: fatigue affects patients with a wide range of health conditions, and with varying degress of physical mobility. Access constraints and difficulty with travel were voiced as barriers in access to treatment for participants with higher levels of physical impairment. These too are likely to affect participation in research and clinical trials. Where we expect participants to show up for laboratory testing, we run the risk of excluding those that are the most impaired. Where suitable, access to hard-to-reach participants can be improved by bringing tests home, and allowing tests to be completed remotely.
Improving ease of assessment: Participants with fatigue report using rest periods between times of activity and physical or mental exertion, in keeping with concepts of moderation or energy management, described in previous research (Wilson et al., 2011). Keeping assessments as convenient as possible, and making interaction with technology brief, natural and easy is likely to help reduce assessment burden for longitudinal studies. This is also likely to improve participant retention and compliance. Near-participant assessments, where assessment of endpoints is enabled anytime and anywhere, can allow participants to fit research around their lifestyles to maximise compliance and retention
Combining subjective and objective assessments: Symptoms of fatigue are broad and wide ranging, including both subjective changes (e.g. mood, anxiety, tiredness) and objectively measureable changes (e.g. cognition, sleep, movement and activity). These different facets of fatigue are measurable using different forms of technology to examine wider profiles of patients affected by fatigue. For example, electronic Clinical Outcome Assessments or brief self-report measures can be collected electronically to examine subjective symptoms; objective assessments can include cognitive tests, and activity data (step count, actigraphy) to examine activity measures and sleep patterns. In many instances, various kinds of data can be collected in a straightforward manner using just one device.
Improving sensitivity to change over time: Our research shows that fatigue almost always changes over time. This signposts the need for time-sensitive assessments, such as technologies supporting repeated assessment. Cambridge Cognition has developed technology to allow high-frequency assessment of symptoms and cognition which can provide data that is sensitive to change over time. Using brief, high frequency assessments it is possible to examine covariation in symptoms, cognition and activity in patient groups and identify ‘good’ and ‘bad’ days in terms of symptomatology and cognition:
Improving engagement and patient-relevant research: Our research suggests that patients with fatigue show strong motivation to manage this key and impairing feature of their chronic disease. People with fatigue and chronic health conditions are overall very pro-active in managing their health, but often feel that their fatigue is not managed well. They find it difficult to obtain information on treatments or support from medical professionals. Acknowledging, and including assessments relevant to experiences of fatigue could help to improve their motivation and engagement in research and trials, by providing insights into key outcomes that are of value and interest to them.
For the full research findings, take a look at our freely available eBook.
Wilson L, Whitehead L, Burrell B. Learning to live well with chronic fatigue: The personal perspective. J Adv Nurs 2011;67(10):2161–2169. [doi: 10.1111/j.1365-2648.2011.05666.x]
Dr Caroline Skirrow - Senior Scientist