Characterization of exhaustion disorder and identification of outcomes that matter to patients, 2023, Lindsäter et al

Characterization of exhaustion disorder and identification of outcomes that matter to patients: Qualitative content analysis of a Swedish national online survey

Elin Lindsäter, Frank Svärdman, Patrik Rosquist, John Wallert, Ekaterina Ivanova, Mats Lekander, Anna Söderholm, Christian Rück

Abstract

Fatigue is a common presenting problem in healthcare settings, often attributed to chronic psychosocial stress. Understanding of fatigue and development of evidence-based treatments is hampered by a lack of consensus regarding diagnostic definitions and outcomes to be measured in clinical trials.

This study aimed to map outcome domains of importance to the Swedish diagnosis stress-induced exhaustion disorder (ED; ICD-10, code F43.8 A).

An online survey was distributed nationwide in Sweden to individuals who reported to have been diagnosed with ED and to healthcare professionals working with ED patients. To identify outcome domains, participants replied anonymously to four open-ended questions about symptoms and expectations for ED-treatment. Qualitative content analysis was conducted of a randomized subsample of respondents, using a mathematical model to determine data saturation.

Six hundred seventy participants (573 with reported ED, 97 healthcare professionals) completed the survey.

Qualitative content analysis of answers supplied by 105 randomized participants identified 87 outcomes of importance to ED encompassing physical, cognitive, and emotional symptoms as well as functional disability. Self-rating scales indicated that many ED participants, beyond reporting fatigue, also reported symptoms of moderate to severe depression, anxiety, insomnia, poor self-rated health, and sickness behavior.

This study presents a map of outcome domains of importance for ED. Results shed light on the panorama of issues that individuals with ED deal with and can be used as a step to further understand the condition and to reach consensus regarding outcome domains to measure in clinical trials of chronic stress and fatigue.

https://onlinelibrary.wiley.com/doi/10.1002/smi.3224

 

Diagnostic Criteria for exhaustion disorder (ED) (F43.8 A)

A. Physical and mental symptoms of exhaustion during at least 2 weeks. The symptoms have developed in response to one or more identifiable stressors, which have been present for at least 6 months.

B. Markedly reduced mental energy, manifested by reduced initiative, lack of endurance, or increased time needed for recovery after mental efforts.

C. At least four of the following symptoms have been present most of the day, nearly every day, during the same 2-week period:

1. Persistent complaints of impaired memory and concentration.
2. Markedly reduced capacity to tolerate demands or to perform under time pressure.
3. Emotional instability or irritability.
4. Insomnia or hypersomnia.
5. Persistent complaints of physical fatigue and lack of endurance.
6. Physical symptoms such as muscular pain, chest pain, palpitations, gastrointestinal problems, vertigo, or increased sensitivity to sounds.

D. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

E. The symptoms are not due to the direct physiological effects of a substance (e.g., abuse of a drug or medication) or a general medical condition (e.g., hypothyroidism, diabetes, infectious disease).

F. If criteria for major depression, dysthymia, or generalized anxiety disorder are met simultaneously, exhaustion disorder is set as an additional specification to any such diagnosis.

 

"In response to increasing sick leave rates due to mental disorders in the late 1990's in Sweden, together with clinical observations that many sick-listed individuals reported prolonged exposure to psychosocial stressors and symptoms of fatigue, tentative criteria for a new diagnosis, “exhaustion disorder” (ED), were introduced in 2003 (The National Board of Health and Welfare, 2003). Diagnostic criteria for ED, dominated by mental and physical fatigue, were subsequently accepted into the Swedish edition of the International Classification of Diseases (SE-ICD-10, code F43.8 A; see Table 1 for diagnostic criteria) as a specification of F43.8 other reactions to severe stress. Although the clinical picture of ED largely resembles that of other fatigue-dominated constructs such as clinical burnout (van Dam, 2021), allostatic overload (Fava et al., 2019), and chronic fatigue (Billones et al., 2021), only ED has been formally included as a medical diagnosis in a major diagnostic system. Since its introduction into the SE-ICD-10, prevalence of the ED diagnosis has approached that of major depression (Höglund et al., 2020), and ED has become the number one cause for long-term sick leave of all somatic and psychiatric disorders in Sweden (The Swedish Social Insurance Agency, 2020, p. 8)."

 

"Given the substantial societal impact of chronic stress and fatigue, there is a need for further investigation into symptom presentation, diagnostic characterization, and steps towards standards regarding outcome domains to measure in clinical trials. Indeed, a recent review of all published studies on ED, published by our research group, indicated that research on the validity of the diagnostic construct is limited (Lindsäter et al., 2022). Assessment and measurement procedures for ED vary across studies, and specific symptom presentation as well as symptom overlap with other psychiatric and somatic conditions have been insufficiently mapped (Lindsäter et al., 2022). Similar challenges have been identified also for burnout and chronic fatigue (Bianchi et al., 2021; Billones et al., 2021; Jason et al., 2010; Nadon et al., 2022; Wessely, 2001)."

 

"4.2 Characterization of exhaustion disorder

Demographic and clinical data collected from ED-participants through closed-ended questions and symptom questionnaires in the present study indicate a clinical picture that is similar to findings from previous qualitative and quantitative inquiries into aspects of ED (Lindsäter et al., 2022). The fact that a large part of participants responding as prior ED patients still reported significant symptoms is in line with findings from long-term follow-up studies of ED, suggestive of prolonged struggle with reduced energy, cognitive difficulties, and uncertainty about one's health (Ellbin, Jonsdottir, & Bååthe, 2021; Ellbin, Jonsdottir, Eckerström, & Eckerström, 2021). Importantly, approximately 50% of ED participants in the present study reported having been diagnosed with other psychiatric or somatic disorders. High comorbidity has been noted also in previous trials of ED (e.g., Glise et al., 2012; Salomonsson et al., 2019), and is a recurring theme in the fatigue literature (Billones et al., 2020; Jason et al., 2010; Leavitt & DeLuca, 2010). It should also be noted that high subjective feelings of sickness were reported in individuals with current ED in the present study, well on par with levels observed in patients with chronic pain, chronic fatigue syndrome/ME (Myalgic Encephalomyelitis) and healthy individuals being made experimentally sick with an injection of the bacterial compound endotoxin (Jonsjö et al., 2020). In summary, findings suggest that the ED diagnosis encompasses a multifaceted and extended symptomatology that is similar to the concept of chronic/persistent fatigue (Billones et al., 2021; Jason et al., 2010; Leavitt & DeLuca, 2010) as well as with burnout (Nadon et al., 2022; van Dam, 2021) and depression (Chevance et al., 2020; Fried & Nesse, 2015). Given the limited evidence to support construct validity of ED to date (Lindsäter et al., 2022), the question of utility of the diagnosis, unique to the Swedish version of the ICD-10, is merited."

 

"Exhaustion disorder" is more like burnout than ME.

 

Yes, ED is another name for burnout ("utbrändhet") in Sweden.

Before landing on ED, the name of the diagnosis used to be "utmattningsdepression" (literally "exhaustion depression"). Many pwME got misdiagnosed, even in the absence of depression. I suspect many still are.

 

They keep doing useless research like this and don't understand why they aren't making any progress, even though it's just the same things in infinite loops. Extremely biased in the choice of questions asked, whereas the free form answers are all about symptoms. They decided it was psychosocial to begin with, and it's the only thing they look at. Bias level is off the charts.

Simply making this about fatigue alone makes this study useless as far as asking patients what matters, they have already decided what matters. They want all the biases in their studies but they also want the studies to be useful but you can't have both in real life.

One thing is certain, they sure do love Wessely and his fatigue stuff. They do mention similarity to ME in terms of severity, so this may simply capture the shorter-term illness and attributes recovery to their magical woo.

How does anyone manage to make listening exercises so utterly pointless by simply not listening to a damn thing and trying too hard to put words into people's mouths? I can't even venture a guess as to the utility of this kind of research. Complete pseudoscience and dereliction of duty.

 

So basically what used to be the commonly known concept of 'that person is utterly exhausted' as they've been overdoing it for 6months and isn't it normal for even normal, well people to feel such effects for a fortnight. That's why a lot of execs get time off between projects. And lots of jobs have good amounts of annual leave.

Whilst I can understand that maybe social circs have changed where people need something on a sick note and for some reason exhaustion from overwork or external situations is no longer allowed?

Is it a 'disorder' or normal for the body to end up this way - because I find it worrying if we are trying to relabel the idea that a body can eventually be broken?

I think there are other terms that can be used which would make it 'officially medically problematically ill' without inferring that effect is unexpected.

I'm sure there is some illogical blurb claiming 'disorder can mean other things blaa' but that's exactly what they will end up with it being treated as. If they did intend it due to it causing dysfunction in the body they'd have said that: systemic dysfunction due to exhaustion induced by overexertion.


What I frankly find most difficult is that if these people have only been this ill for a fortnight, having been through all of whatever for 6months then they are not in an appropriate position to have someone shoving any kind of questionnaires in their faces - particularly where it doesn't pertain to their health being progressed by it and I, knowing what I'm like when in a crash, see it is as something that should be seen as having consent issues or at least a very skewed sample.

How can that be 'informed' or 'volunteered' if you are knackered - there is no good, sensible reason why someone would want to fill these in unless it was to just try and get said person to go away, believed something else was attached to doing or not doing it, or because that person felt it was the easier option vs something else?

It is one thing for a medic to check on how someone is if they are that exhausted for clinical purposes, quite another to parse what utterly exhausted people ended up writing to open-ended questions in an online survey. This habit of it being signed off for ill, exhausted people to do surveys of whatever length and wording the researcher fancies - instead of having to calibrate it to e.g. wat they could manage if they stayed up for 5 days straight on a shift or long-haul flight seems so anti-psychology from what we know of design?

 

One aspect of the Swedish social insurance system that might be worth adding to the discussion here is the so called guidelines for insurance medicine by Socialstyrelsen/the National Board of Health and Welfare.

From them you can learn a lot about how this diagnosis is being viewed in Sweden.

https://roi.socialstyrelsen.se/fmb/utmattningssyndrom/546

(There are no equivalent guidelines for ME as of yet, which is a double-edged sword. Probably for the better on the whole though, since the main idea with this kind of guidelines is to make sure to keep sick leave as short as possible.

Some doctors even choose to put the wrong diagnosis on the forms for some pwME, since they know from experience that it's much easier to get sickness benefit from Försäkringskassan/the Social Insurance Agency for ED than ME.)

 

Thanks, that is fascinating. So that I don't assume anything, how are those with ED treated then (in the general as much as medical) compared to ME?

 

ED as a diagnosis is widely accepted, and there is much less stigma put on pwED compared to pwME. Healthcare providers and people in general are well informed about ED.

ED is a psychiatric diagnosis, so I'd say pwED are met with the "regular amount" of mental health discrimination and stigma, similar to people living with anxiety and depression. But lots of understanding and sympathy too.

It's been many years now since I was misdiagnosed with ED, but at the time I was treated well in general, in relation to the ED diagnosis. Never with the kind of disbelief, questioning, ridicule, hate, gaslighting and discrimination that I'm constantly met by as a pwME.

 

In this video clip/article from Stockholm University, published in May 2022, researcher Gustav Nilsonne of the Stress Research Institute at the Department of Psychology (Stressforskningsinstitutet vid Psykologiska institutionen), talks a little bit about the project which this study is part of.

Undersöker diagnosen utmattningssyndrom
https://www.su.se/nyheter/undersöker-diagnosen-utmattningssyndrom-1.610711

Nilsonne believes that there are ED patients in other countries too, but "they are usually given other diagnoses in other countries, maybe most often depression or CFS".

He adds that ED as a diagnosis has existed in Sweden for 20 years now, so it's time to take a good critical look at what it has led to, and to evaluate its value.

Region Stockholm (the local government responsible for healthcare etc) is financing the project with 2 million SEK over a period of 3 years.

Here's a page about the project in English:

Exhaustion Disorder – an appraisal
https://www.su.se/english/research/research-projects/exhaustion-disorder-an-appraisal

 

Three of the authors of this study took part in the BPS oriented ME seminar in Oslo in October 2022, according to this tweet: