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Experiences and perspectives of patients with post-polio syndrome and therapists with exercise & CBT

Dolphin

Senior Member
Messages
17,567
Somebody highlighted this to me as the sort of study they would like to see done in the ME/CFS field.

Free full text: https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-016-0544-0

BMC Neurol. 2016 Feb 10;16:23. doi: 10.1186/s12883-016-0544-0.
Experiences and perspectives of patients with post-polio syndrome and therapists with exercise and cognitive behavioural therapy.
Bakker M1, Schipper K2, Koopman FS3, Nollet F4, Abma TA5.


Abstract
BACKGROUND:
Many persons affected with poliomyelitis develop post-polio syndrome (PPS) later in their life. Recently, the effectiveness of Exercise Therapy (ET) and Cognitive Behavioural Therapy (CBT) for PPS has been evaluated in a randomized controlled trial, but did not show a decrease in fatigue or improvement in secondary endpoints like Quality of Life and self-perceived activity limitations. The aim of this explorative study was to gain insight in the perceived effects and experiences of the interventions from the perspectives of the patients and therapists.

METHODS:
Qualitative data were collected through semi-structured interviews with 17 patients and 7 therapists. All participants were involved in the trial. A thematic analysis of the data was performed.

RESULTS:
Some patients experienced a short term enhanced endurance and a better use of energy during the day. However, in general patients did not experience a long lasting reduction of fatigue from the CBT or ET. Mainly patients of the CBT, but also some patients of the ET described an increase of self-esteem and self-acceptance. As a result, patients were sometimes better able to perform physical activities during the day. In contrast to the CBT, the ET was in general perceived by the patients as an intensive therapy, which was difficult to fit into their daily routine. Therapists of both the CBT and the ET struggled with a low intrinsic motivation of the patients in the study. This made it sometimes difficult for the therapists to follow the protocol.

CONCLUSION:
Confirming the negative quantitative study outcome, the qualitative results did not demonstrate lasting effects on fatigue. Patients did, however, experience some benefits on self-esteem and acceptance of the disease. This study showed that it is of great importance to work with feasible interventions; they should fit the patients' needs on a practical (fit into their daily routine) and mental (fit their need for support) level.

PMID:

26862038

PMCID:

PMC4748446

DOI:

10.1186/s12883-016-0544-0
[Indexed for MEDLINE]
Free PMC Article
 

Dolphin

Senior Member
Messages
17,567
I didn't find it as interesting as I hoped.

I think the authors were a bit into trying to find some evidence that the treatments did work or might work under other circumstances. Supposedly the quantative side of the study found no improvement.
 
Last edited:
Messages
13,774
I think the authors were a bit into trying to find some evidence that the treatments did work or might work under other circumstances.

The abstract gives the impression of a desperate attempt to put a positive spin on things. That could be interesting in itself.

Thanks for posting about all these papers. I'm barely able to keep up with just the PACE related stuff coming out at the moment, so handy to have little summaries from related papers being posted.
 

Dolphin

Senior Member
Messages
17,567
Beside a selection of participants for the trial, we would also recommend to involve patients in the trial design. Other studies have shown the value of such patient participation in research [34, 35] combine qualitative as well as quantitative research methods for such a study, as qualitative research addressing the users’ perspective on motivation, expectancies and effectiveness of interventions is valuable but still rare [36]. A description of the experiences of different users (patients as well as therapists) can provide important insights of all aspects of the intervention.
 

Dolphin

Senior Member
Messages
17,567
For what it is worth:
Patients’ experiences
Although most patients did not experience a decrease in fatigue after CBT (quote 6), most experienced the CBT as valuable. This was due to other physical and/or mental improvements resulting from the therapy. Physical improvements included a better use of energy during the day (quote 7), an increase in the possibility to do some physical activities for a longer period (quote 8), less sleeping during daytime and taking more rests (quote 9).

On a mental level, patients felt considerable and more improvement than expected beforehand (quote 10). Some reported they were, due to the CBT, better able to accept their disabilities (quote 11), whereas others were more resigned with their emotions (quote 12). Considering the self-esteem, patients indicated they felt more assertive, dared better to stand up for themselves and attached less importance to other peoples’ opinion. This gave them a feeling of more freedom and the possibility to be themselves (quote 13). Patients considered the effects of the CBT to be long lasting (quote 14).
My recollection is that CBT for CFS can involve trying to increase assertiveness among other things.
Which could be useful. Though this does not seem like a CFS-specific element. Similarly CBT could encourage somebody to have more rests which might have some benefit, though again this is not the central element of CBT for CFS normally.

It can be a little interesting to read why patients say therapy such as CBT helps. It could give information on why they might say it helps in questionnaires.
 

Dolphin

Senior Member
Messages
17,567
For what it is worth:

Exercise therapy:


Patients’ experiences
Most patients (n = 7) described some physical improvement due to the ET, such as increased muscle strength, weight loss or increased endurance. Furthermore, a couple of patients (n = 3) highlighted the fact that they were, due to the therapy, more aware of their limitations, resulting in a better distribution of their energy (quote 28). However, these physical improvements were perceived as a short-term outcome, which often had faded shortly after finishing the ET which did not outweigh the effort of the therapy. In general the patients did not experience decrease in fatigue (quote 29).

An increase in self-esteem and self-acceptance was mentioned by some patients as improvements on a mental level. This was sometimes the result of the ET itself, and sometimes of the conversations patients had with peers in the group session. The contact with peers helped patients to better accept their disabilities (quote 30). The ET led in some cases to an increased confidence of patients about their bodies, resulting in a rise in physical activities (quote 31).

All patients described the therapy as hard. The physical effort, the fact that cycling was often experienced as boring, and the time investment were stressed by the patients as being key to the difficulty of the therapy (quote 32) The time-investment made it hard to complete the intervention and sometimes led to drop outs (quote 33).

A lot later (in the discussion) it gives the following results:
These results were not supported by the quantitative findings of the RCT [9] which showed no increase in endurance, muscle strength or daily activity.
 

Dolphin

Senior Member
Messages
17,567
CBT

Experiences of therapists

I had one patient who had a beautiful score at the end of the therapy. This woman with post-polio mainly worked on meaning of life questions’
I impression that CBT is not supposed to be about meaning of life questions.

---

‘I sometimes used the protocol a bit as a guide line (…). For example with the graded activity. It is not always helpful to focus too much on increasing activity, because some that would burden people too much’
I wonder how often this occurs in creative activity-oriented CBT for CFS.
 

Dolphin

Senior Member
Messages
17,567
Quotes about the ET
26.

‘That I gain insight in how to handle my body in a good way, without getting to exhausted. I try to listen to my body, I have to because of the pain, but I think I could still learn a lot’

28.

‘I’ve learned not to cross the line over and over again. And because of that, I’m better able to do the things I want’
Sounds like pacing

---

32.

I just couldn’t keep up. With a lót of effort I came to a certain point, but after that I just could not do it anymore, I absolutely couldn’t…’
33.

[Because of all the activities during the day] I am just tired in the evening. And then you have to start training at nine thirty in the evening. At a certain point I was training in my pyjama’s! That was too much’
---
Experiences of therapists

37.

[These patients] used to have ‘fighters spirit’ and now they suddenly have to learn not to spill their energy. For this group I therefore try to focus on únderachievement [rather than overachievement]’
I could imagine that happens with CFS also
 

Dolphin

Senior Member
Messages
17,567
An important finding of our study is that some patients were not able to combine their daily activities with training three times a week. This is in line with other studies that stressed the importance of the ability to incorporate the training in one’s everyday life [26, 27, 28]. If the therapy is very time demanding or it does not fit into the daily routine, patients become less motivated and sometimes abort exercising.
 

Dolphin

Senior Member
Messages
17,567
In general, the group training was experienced as positive; it was perceived as valuable to talk to peers. Dodd et al (2006) describe that people with MS also benefit from a group training. Individual home training requires more discipline and might therefore be more difficult for people. Although some patients did drop out, the completion of the program was rather high. This might has to do with the high motivation of patients to participate in the trial in the first place The will of patients to finish the program in the interests of science can be quite strong [26, 28].
 

RogerBlack

Senior Member
Messages
902
One awesome thing - this is going away.
This year, there have been a handful of polio cases leading to paralysis.
In 1980, this was a few hundred thousand.

It looks like - with luck - the wild virus is likely to be eliminated this decade.
However, due to the vaccine design, one sort of vaccine can in some people persist in the body, and spread to others. If not enough people in an area are vaccinated, over time, this can spread, and become able to cause disease again.

This is also on a downward trend, but there have been several dozen, not several cases of this this year, so is unlikely to be wiped out this decade, unless things go very well.

It seems plausible however that well under a thousand more people will get polio, ever, compared to the many, many millions that have in history.