Factors impacting the illness trajectory of post-infectious fatigue syndrome: a qualitative study of adults' experiences (2017) Jason et al

hixxy · Dec 15, 2017

Stormorken E, Jason LA, Kirkevold M.

Abstract

BACKGROUND:
Post-infectious fatigue syndrome (PIFS), also known as post-viral fatigue syndrome, is a complex condition resulting in physical, cognitive, emotional, neurological, vocational and/or role performance disabilities in varying degrees that changes over time. The needs for health care resources are high, and costly, as is the economic burden on the affected individuals. Many factors may impact the trajectory, and frequently PIFS develops into a chronic condition. Health professionals lack understanding and knowledge, which results in delayed diagnosis, lack of recognition, appropriate treatment, support and practical help. The aim of our study was to explore, from the perspective of persons who had lived with PIFS for four years following an outbreak of Giardia l. induced enteritis, factors that may have impacted their illness trajectory and how these factors had played a role during different phases.

METHODS:
In this retrospective exploratory qualitative study a group of 26 affected adults between 26 and 59 years old were selected for in-depth interviews. A maximum variation sample was recruited from a physician-diagnosed cohort of persons with PIFS enrolled at a tertiary outpatient fatigue clinic. The interviews were audio-recorded, transcribed verbatim and subjected to qualitative content analysis.

RESULTS:
Unhelpful and helpful factors were associated with the healthcare system, health professionals and the affected persons were experienced as having an impact on the trajectory. External impacting factors which are related to the health care system, providers and the social security system are misdiagnosis, trivialization of symptoms, unhelpful advice, delayed diagnosis and lack of appropriate help. Internal impacting factors related to the affected individuals were lack of knowledge, overestimating functional capacity, assuming the condition will pass, ignoring body signals and denial. A model of impacting factors in each phase of the trajectory is presented.

CONCLUSION:
Unmet needs may result in unnecessary disability and high societal and personal costs. Enhanced knowledge of impacting factors in each phase of the trajectory may contribute to more timely and tailored health care services and less use of health services. Increased functional capacity, improved health and ability to work or study may reduce the societal costs and the economic burden for the affected individuals.

KEYWORDS:
Chronic fatigue syndrome; Disability; Health care costs; Impacting factors; In-depth interview; Myalgic encephalomyelitis; Patient experiences; Post-viral fatigue syndrome; Trajectory
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https://www.ncbi.nlm.nih.gov/pubmed/29237442
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-017-4968-2

MeSci · Dec 16, 2017

This looks spot-on. All health professionals should read it!

Trish · Dec 16, 2017

I agree, it's very good. It makes clear the damage that is done by lack of medical knowledge and financial and practical support for patients.

My only complaint, given that most doctors would only read the abstract, is that the abstract is too vague.

For example, instead of this:
''External impacting factors which are related to the health care system, providers and the social security system are misdiagnosis, trivialization of symptoms, unhelpful advice, delayed diagnosis and lack of appropriate help.''

I would have liked it to make clear specifically the need for doctors to recognise the seriousness of the condition and advise listening to the body and RESTING as much as needed. And for government agencies to provide the financial and practical support for patients to reduce or stop work. And to make it clear that exercise leads to long lasting worsening of symptoms and ability to function leading to higher medical and care costs in the long run.

In other words, instead of just saying 'unhelpful advice' I would have liked them to say 'unhelpful advice to exercise and continue working'.

Esther12 · Dec 16, 2017

I've only read the abstract, but there's a limit of what can be concluded on the basis of a "retrospective exploratory qualitative study a group of 26 affected adults". I suspect that if White had written the article, he'd have made quite different 'findings' from the same evidence, so it's best to be cautious about this sort of thing.

Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958049813777539072

Note that they sometimes use the term "economic" in a way that is a bit confusing:
e.g. "This coupled with a strained economic situation". They are referring to the individual financial situation of the patient rather than how the country's economy is doing. The corresponding author's first language is probably not English.

Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958059239121080320

Tom Kindlon · Jan 29, 2018

How to interview people with ME/CFS:

Interviewing vulnerable persons may trigger painful emotional reactions. When crying spells occurred in a few participants, they were asked if they wanted to terminate the interview. However, they orally renewed their consent to continue [71] as they wished to complete their story of living with the condition. Persons with PIFS may experience symptom flare-ups following any kind of exertion, have a low capacity limit and can become easily fatigued [42]. To reduce harm and minimize any inconvenience the interview room was dimly lit and quiet, and the interviewees sat in a recliner with foot stool and were offered light refreshments during the interview.
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Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958086955102765056

Tom Kindlon · Jan 29, 2018

Many participants felt that their general practitioners (GPs) trivialized their symptoms. The following is a sample statement: ‘“I think I’ve got Giardia.” [The GP:] “No! Absolutely not! You haven’t.” Like [my complaints] was a typical female [thing]’ (P19). When full health was not regained as expected, the GPs related their symptoms to stress, psychological problems or other causes: ‘I went to see the GP, and he assumed I suffered from eating disorder, which I of course didn’t do’ (P8). Lack of knowledge among GPs and their tendency to not take the symptoms seriously caused a prolonged time to reach diagnosis.
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Tom Kindlon · Jan 29, 2018

Some participants feared they were seriously ill and needed urgent medical care, but they no longer had faith in their GPs. The GPs lack of knowledge and failure to take their clients seriously created an atmosphere of distrust and a strained medical encounter, which only added to the participants’ emotional burden:
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Tom Kindlon · Jan 29, 2018

Unhelpful internal factors
At first, the gastrointestinal problems and tiredness were experienced by the participants as symptoms of a common infection that occurs among individuals from time to time. The participants did not understand what was wrong with them, and some of them also related it to stress. They made statements like: ‘I didn’t know what it was… thought it was a nervous stomach… but I didn’t feel stressed’ (P2), or‘ thought it was other factors’ (P16). As the participants thought the infection would pass by itself, they pushed themselves to continue working or studying, with a negative result as they experienced a deterioration of their health, expressed by one participant as: ‘What I’ve done… hasn’t been wise’ (P3).
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Tom Kindlon · Jan 29, 2018

Unhelpful treatment-related external factors
Seemingly, the GPs did not listen attentively to catch the difference between fatigue and depression or understand the participants’ complaints. Thus, several GPs confused the profound fatigue with depression, eating disorder, burnout, or psychological problems. Misdiagnosis in some cases resulted in unhelpful treatment with antidepressants that made some participants worse. One participant said, ‘The GP told me: “You’re depressed... called hidden depression.” She prescribed antidepressants to me that made me extremely much worse’ (P19).

As mentioned above, many participants experienced emotionally strained relationships with their GPs: ‘The doctor threw me out, wouldn’t have me as her patient: “I’m asking you to find another doctor”.And I’d seen her for three years’ (P10).

Some participants or their caregivers came to realize the diagnosis through newspapers or a television program before meeting with their GPs. Diagnostic delay of PIFS seemed unhelpful: ‘I should have known what was wrong with me at an earlier stage. I would have made other choices. This probably made me worse’(P26).
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Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958093935062208512

Tom Kindlon · Jan 29, 2018

Because of lack of appropriate medical advice, the participants tried to do their best on their own. As they were not in control of their condition, they did not know when to stop doing things that made them worse, and this also seemed to contribute to the downward trajectory. The participants were afraid that the way they had managed their condition would harm them ‘for the rest of [their] lives’ (P10).
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Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958103139483377665

Tom Kindlon · Jan 29, 2018

Unhelpful external societal moral expectations
Twenty-four of the 26 participants did not experience embarrassment by being ill with PIFS: They said, ‘No, no. no, it’s not embarrassing, it’s frustrating’ (P25). However, many of the participants experienced embarrassment and humiliation connected with their disabilities such as cognitive impairment, easy fatigability and lack of energy and stamina when failing to meet other people’s socially grounded expectations:
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Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958107448077930496

Tom Kindlon · Jan 29, 2018

Unhelpful internal factors
The participants did not realize that they were suffering from a serious medical condition and continued to manage their lives with PIFS in the same way they had in their prior healthy life. Working or studying as in pre-illness life made them more and more fatigued and increasingly functionally disabled. They did not understand why they continued to deteriorate: ‘I don’t understand it myself’ (P16).

The fatigue and fatigability in PIFS was experienced as something else than tiredness in ordinary life: ‘[T]here’s a huge difference between being tired and fatigued’ (P26). However, it took a long time before they realized that the fatigue and concomitant symptoms were signs of a medical condition: ‘I didn’t define myself as sick before I couldn’t go out of bed’ (P8).

Although the participants were cured of their Giardia d. infection, they continued to feel that something was wrong with their bodies, as they experienced numerous unpredictable fluctuating symptoms that were difficult to understand. All the participants were overwhelmed, experienced a sense of chaos and were unable to comprehend what was going on:

I’ve hardly grasped this, no logic… symptoms… It’s not like you have this today and that tomorrow, or you have all at once, because it alternates. It can be everything in one day or it can be something else the next day. And the severity varies considerably, and it can vary within a day, and it can vary within a week… and it’s related to activity… and it does not help to think positively, that’s not enough. It hasn’t been in a way that I could say that this is cause or effect… not been in a way that I can predict anything (P9).

During the first years, the participants tried hard to live as they had in their healthy lives: ‘I fought and fought… tried insanely hard [to live my old life]’ (P16). They thought more physical activity was a solution for their increasing fatigue: ‘I started exercising... maybe that was the solution... if you exercise, you get more energy’ (P4), they thought, but this did not work. Some expressed that they had put their life on hold and just were waiting to wake up one morning as healthy so they could go on with their former life. Some said: ‘I have in a way put [my life] on hold’ (P13). Denial and lack of acceptance seemed to delay improvement:

I refused to believe it. I denied it and I know that I almost still deny it. So I kept on working until it no longer was possible… [only] lying on the couch and in bed (P8); I’ve never accepted being sick (P20).

The self governed the body in a fight to regain the pre-illness life and pushed the body to perform as expected when healthy:

Before [I got ill] I knew exactly what the body could provide. [Then, when I got this] I lost my autonomy [and control] over the [body’s capacity to perform on demand] (P1); t’s gone beyond what I can control, no influence on it (P16).

As the participants had not learned how much their ill body could provide in terms of energy to perform as expected, they overestimated their capacity limit, both at work, when studying or in their personal life, resulting in crashes and reduced functional ability:

I hadn’t learned to stop in time… years passed with crash after crash (P26); Yes, I pushed myself so hard that I ended up in hospital (P16).

The participants sought to find different explanations for their suffering: ‘I tried to find reasonable explanations based on [earlier] experiences’ (P23). Since they lacked knowledge, they used their ‘old’ experiences and coping strategies to deal with their new challenges.

During the downward phase, the participants had still not learned by trial and error that increases in symptom severity and worsening of fatigue were warning signals of the body’s capacity limit. Thus the body’s physical, cognitive and emotional signals were ignored, ‘There were clear signs, easy to overlook’ (P1).

The participants seemed to lack or have a reduced cognitive capacity and ability to reflect on their own needs for help or assistance because of fatigue, energy loss and cognitive impairment:

I haven’t really reflected on my needs… don’t even know what the health care system can offer (P20); I was so ill that I didn’t think… failed to reflect (P7).
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Tom Kindlon · Jan 29, 2018

https://twitter.com/user/status/958120707426340870

Tom Kindlon · Jan 30, 2018

Helpful internal factors
During the turning phase, the participants realized that the relationship between body and self had to change, and that they had to listen to what their body signals were trying to tell them, ‘I haven’t listened to them, probably the reason for the situation I’m in now’ (P20). The time had come to let the body take charge. When the body took control, they experienced that they were able to find out how much their body could perform without provoking symptom flare-ups or hampering improvement:

If I pushed a little too hard… very unwise. Yes, [my desires and driving forces have been much stronger than the body’s capacity], that’s how I see it. I’ve probably pushed my body too much all the time (P13).

In this phase the participants realized they could no longer keep up with their pre-illness lifestyle, but had to change how they perceived their condition. This engendered a process of recognition and acceptance: ‘I’ve had to really go into myself. I’ve realized that I’m sick. I’ve started thinking like that. Pretending to be healthy, when you are not, is not working’ (P13).

The first years without control over their own bodies and lives posed a great challenge, but, during the turning phase, the participants began working with themselves to regain control:

I looked at how I could work with myself as a project. I see new avenues. The most important is that I accept to be in a phase where I build myself up again (P3); I’ve more control. Now I’ve to do this, now I’ve to that (P11).

The participants realized that lifestyle changes were necessary, including taking time off, resting more, changing their focus from others’ needs to their own, being laid back and finding a harmony between the body and self. In other words, they started to care for themselves:

[It] just suddenly turned when I started teaming with myself (P3); In retrospect I see that… recharge… is an important key factor. I daren’t think of the consequences if I had just continued as I did (P16).
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