2 July 2020
Experts by experience: patient priorities for treating fatigue
People actively manage their fatigue through a range of medical and non-medical approaches, but many are not satisfied with existing treatments. In order to find out more from this highly motivated patient group, we conducted a study into their lived experiences.
Are patients with fatigue satisfied with their current treatment options?
Patient-centred research is key to understanding whether treatments are offering outcomes which matter most to the patient. We recently asked several patients with fatigue about their experiences. Most participants in the study responded that felt that their current treatments did not manage their fatigue particularly well.
What are the downsides to treatment?
Of the participants who reported downsides to their current treatment, one fifth described medication side effects: such as feeling tired, groggy, dizzy and having brain fog. For some these problems were linked to use of sleeping pills, in others they were linked to treatments for their underlying chronic health conditions, and in yet others the source of side effects was unclear. 12% of the group complained that efficacy was poor.
As we described in our previous blog, around a third of participants reported increasing sleep and rest to manage their fatigue. Many who managed their fatigue through rest felt that this took up a lot of their time, making them unproductive, reducing their ability to take part in other activities and making them miss out on things that interested them.
What do patients consider when selecting treatments and therapies to try?
We asked participants which factors they consider when selecting a treatment or therapy. Overall, they showed a willingness and openness to new treatments, or had already tried a number of different treatment options. The three main criteria for selecting the treatment were:
- cost (reported by 21%)
- side effects (19%)
- efficacy (18%)
Around 8% of patients also described the importance of ease of access to treatments, including distance and time it takes to travel for appointments or treatment.
A reasonable proportion of participants (14%) did not want to take more medication, or wanted to use natural options. Some participants stated they would be concerned about the effect of fatigue medication on their chronic health condition(s), or interactions or interference with current medications.
Information sources for identifying treatments included participants’ physicians or other medical professionals, research in medical journals, information in books or on the internet, and community information exchange (friends, family, or disease networks).
What do patients value in fatigue treatments?
When asked about their ideal treatment for fatigue, similar themes arose - treatments should be:
- effective (35%)
- affordable (24%)
- without side effects (26%)
A smaller proportion of participants wished to move over to natural treatments, others reported that they wanted to reduce or stop medication or use medications as needed rather than regularly. Ease of access, use and management of treatments was also considered important, as well as treatments being comfortable or non-invasive.
Some participants described specific areas they wanted to target, such as reducing pain, tiredness, increasing alertness and energy, improving sleep, lifting or stabilising mood, and improving cognitive function, and physical and mental wellbeing.
What stops patients from accessing treatments?
Approximately a third of participants reported that there was nothing stopping them from accessing treatments for fatigue. These were overall a younger group, who reported better treatment efficacy and were affected by fewer chronic health conditions than the remainder of the sample.
For the participants who reported problems with accessing treatment for fatigue, these limitations included:
- access to information and support
- expected or perceived support
- physical restrictions
Within this group, almost half reported cost limitations or related problems with health insurance. This was associated with how well participants felt their treatment was managed: those who described cost as a major barrier to treatment also reported that their fatigue was managed more poorly.
Many participants were unaware of options for treating fatigue, or reported that they had difficulties obtaining information or support through their medical practitioner. Other issues raised were problems with obtaining physical access to treatments, due to mobility restrictions or long waiting times for appointments.
Although stigma was voiced explicitly by only one participant, there was a general sense that access to support was limited more broadly by stigma, either because medical practitioners did not provide support or treatment options, or because they considered fatigue as a secondary, or unimportant features of ill-health.
For the full research findings, take a look at our freely available eBook.
Dr Caroline Skirrow - Senior Scientist