"The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients' experiences, 2023, Hammer et al

[Kitty]

Now published - link here


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Preprint

From @MSEsperanza:


"The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients' experiences with inpatient rehabilitation for long/post COVID, Hammer et al [full text in German only]

Abstract

Background: In Germany, an estimated number of 70,000 people diagnosed with LONG COVID or Post-COVID-Syndrome (PCS) received inpatient medical rehabilitation by the end of 2022. Due to the heterogeneity of the clinical picture, the variability of measures and inconsistent endpoints, previous studies on the effectiveness of rehabilitation are only of limited value. It therefore remains unclear whether and to what extent established rehabilitation measures for e.g. pulmonary, cardiological or neurological diseases are suitable for patients with PCS.

Objectives: Identification of barriers and facilitators for the success of inpatient medical rehabilitation from the perspective of patients with PCS

Methods: Structuring and summarizing qualitative content analysis of open answers from a retrospective online survey in January 2023, supplemented by descriptive results of standardized answers.

Results: Of 1191 participants in the survey, 733 used open response formats to additionally explain their experiences and the effects of individual measures on their general condition. The presence of a post-exertional-malaise (PEM) or its insufficient consideration during rehabilitation was described as a central barrier. 366 (50%) of the 733 participants reported that their state of health had deteriorated, mainly as a result of strength or endurance training and too extensive treatment plans. The recognition and acceptance of individual performance limits, flexible and coordinated treatment planning tailored to individual limitations, and support in coping with the disease were described as supportive factors. From the perspective of the participants, learning strategies to avoid a deterioration in the state of health due to overexertion, the so-called pacing, should be a central treatment goal for patients affected by PEM.

The need for individual and interdisciplinary treatment was expressed in order to address all relevant symptoms.

Discussion & Conclusion: The results are not statistically representative, but show that for PCS patients with PEM, even minimum requirements for rehabilitation measures can lead to overload and aggravation. Therefore, a reliable test for PEM and rehabilitation ability before the start of rehabilitation is necessary to ensure safety for those affected. Common, subject-specific rehabilitation concepts appear to be only partially suitable for dealing with the symptoms and the heterogeneity of the disease. Aims and measures should be individually adapted, and the focus should be on pacing, disease coping and management.

To adequately classify studies on the effectiveness of rehabilitation, risks and side effects should be disclosed.

Keywords: long COVID, post-COVID-syndrome, rehabilitation, qualitative research, patient-reported outcomes, shared decision-making

Citation
Hammer, S., Schmidt, J., Conrad, A., Nos, C., Gellert, C., Ellert, C., Nuding, U., & Pochaba, I. (2023). "Der Reha-Gedanke muss bei dieser Erkrankung völlig neu gedacht werden" Eine qualitative Analyse von Erfahrungen Betroffener mit stationärer Rehabilitation bei Long/Post-COVID (1.0.0). Zenodo.

https://doi.org/10.5281/zenodo.10061153

 

[Sean]

Discussion & Conclusion: The results are not statistically representative, but show that for PCS patients with PEM, even minimum requirements for rehabilitation measures can lead to overload and aggravation. Therefore, a reliable test for PEM and rehabilitation ability before the start of rehabilitation is necessary to ensure safety for those affected. Common, subject-specific rehabilitation concepts appear to be only partially suitable for dealing with the symptoms and the heterogeneity of the disease. Aims and measures should be individually adapted, and the focus should be on pacing, disease coping and management.

Worth repeating with emphasis.

 

[Trish]

This looks like a really important report. The fact that half of the patients, ie over 300, report deterioration should be a wake up call for everyone attempting to rehabilitate with exercise people with PEM, whether diagnosed with ME/CFS or Long Covid.

 

[Ash]

One thing that makes me really sad every time, is when I imagine doing rehab and getting stronger and stronger. Because next moment I will realise that I’m in my daily day dream and that actually in the physical realm I can’t get out bed for longer than the time it takes me to have a pee and not feel like I am gonna vomit profusely. That no amount of repetition and addition in sitting standing or walking has increased my stamina past this four minute mark in years.

I hope that this impediment to improvement these hard limits to our capacities, based on activity increases, will one day soon be investigated fully by researchers and then acknowledged by healthcare providers, and thereby might be able so save others, patients, from such false hope followed by dashed hope.

 

[Keela Too]

Part of ME (to me) is a complete inability to increase fitness at will. It’s almost a defining feature.

Sure sometimes we can get lucky, and our level of disability can lessen, but that’s really not a choice open to us.

I got lucky with a drug trial (either that or something else happened at the same time) and my functioning level improved considerably. That was back at the beginning of 2016, and although I’ve had some waves up, which I’ve attributed to various things I am doing at the time, I’ve also had waves down, and my average annual stepcount doesn’t vary much.

Believe me, if it was just about exercising more I’d have done it. It’s what I’m itching to do literally every day!

 

[Sean]

Part of ME (to me) is a complete inability to increase fitness at will. It’s almost a defining feature.

Yep. The negative physiological response to activity, particularly the delayed component (PEM), is the core of the disease.

Until it is also at the core of research and clinical practice, the decades-long failure to come up with a realistic explanation and effective treatment will continue.

 

[Sean]

The fact that half of the patients, ie over 300, report deterioration should be a wake up call for everyone attempting to rehabilitate with exercise people with PEM, whether diagnosed with ME/CFS or Long Covid.

At the absolute minimum those advocating exercise therapy need to have a robust means to predict who will safely benefit, and who won't.

 

[EndME]

„Der Reha-Gedanke muss bei dieser Erkrankung völlig neu gedacht werden“ – Qualitative Ergebnisse einer Online-Befragung zu Erfahrungen Betroffener mit stationärer Rehabilitation bei Long/Post-COVID

Abstract

Background
In Germany, an estimated number of 70,000 people diagnosed with long COVID or post-COVID syndrome (PCS) had received inpatient medical rehabilitation by the end of 2022. Due to the heterogeneity of the clinical picture, the variability of interventions and inconsistent endpoints, previous studies on the effectiveness of rehabilitation are of limited value. It therefore remains unclear whether and to what extent rehabilitation measures established for, e.g., pulmonary, cardiovascular, or neurological diseases are suitable for patients with PCS.

Objectives
To identify the experiences and perspectives of those affected by PCS, in relation to inpatient rehabilitation and to describe patients’ values and wishes with respect to evidence-based medicine.

Methods
In January/February 2023, the German initiative “Long COVID Deutschland” conducted a retrospective online survey (39 closed items, two open answer fields) among adult PCS sufferers on their experiences with inpatient rehabilitation. Recruitment was carried out via social media and websites of patient initiatives. The open answers were analyzed using a structuring and summarizing qualitative content analysis according to Mayring, supplemented by descriptive representations of the distribution of standardized information.

Results
Of 1,191 participants in the survey, 733 used open response formats to additionally explain their experiences and the effects of individual measures on their general condition. 366 (50 %) reported that their state of health deteriorated, mainly because of strength or endurance training and too extensive treatment plans. The presence of a post-exertional malaise (PEM) or its insufficient consideration during rehabilitation was described as the main barrier. Recognition and acceptance of individual performance limits, flexible and coordinated individual treatment plans tailored to the patient’s limitations, and support in coping with the disease were described as supportive factors. From the participants’ perspective, learning strategies to avoid deterioration in their state of health due to overexertion, the so-called pacing, should be the core treatment goal for patients affected by PEM.

Discussion
The results are not statistically representative but ensure systematic insights into the subjective perspectives of those affected, the consideration of which represents one of the three principles of evidence-based medicine. The results show that for PCS patients with PEM, even minimum requirements for rehabilitation measures can lead to overexertion and aggravation.

Conclusions
Common subject-specific rehabilitation concepts appear to be only partially suitable for dealing with the symptoms and the heterogeneity of the disease. Aims and interventions should be individually adapted, and the focus should be on pacing, disease coping and management. A reliable test for PEM and rehabilitation ability before the start of rehabilitation is needed to ensure safety for those affected. To adequately classify studies on the effectiveness of rehabilitation, risks and side effects should be disclosed.


https://www.zefq-journal.com/article/S1865-9217(24)00092-8/fulltext

 

[rvallee]

In Germany, an estimated number of 70,000 people diagnosed with long COVID or post-COVID syndrome (PCS) had received inpatient medical rehabilitation by the end of 2022

previous studies on the effectiveness of rehabilitation are of limited value

Normal, serious, professionals usually don't do something over 70K times without knowing if it has any value. Not even 7K. Hell, not even 700. They went into full production when the prototypes didn't even work, what the hell did they expect?!

And as it turns out, the evidence before LC was actually against, so zero surprise that we find the same thing we have know for decades:

366 (50 %) reported that their state of health deteriorated, mainly because of strength or endurance training and too extensive treatment plans.

This alone should require all of this to end. It's completely unacceptable that anywhere close to half are made worse.

pacing, should be the core treatment goal for patients affected by PEM

We were 100% right about everything, and they were wrong about everything. This is basically the main point of controversy with the biopsychosauruses.

The results are not statistically representative

Why aren't they? Oh, right, because they don't validate the expectation and they did it 70K+ times so it's embarrassing.

Common subject-specific rehabilitation concepts appear to be only partially suitable for dealing with the symptoms and the heterogeneity of the disease

How so? It's harmful to half and there is zero evidence that it provides benefits. 70K+ is more than enough to know for sure.

So it clearly doesn't work, but it's believed that it should, strongly enough that even though the entire premise is falsified, it should somehow continue to do useless things, while reducing, but not eliminating, harms, because the profession has long been in denial over the existence of chronic illness in the first place, and doesn't even come close to understanding PEM.

In any normal setting, this is a total admission of failure. The profession has been ignoring basic facts and patient reports of harm for so long that it can't find the courage to admit it, but this is as plain and simple exposition of the invalidity of the entire paradigm. Pacing isn't about being given the right advice from the right therapists, it's convalescence and requires material and personal support. But more than anything this is a research problem, the solution isn't going to be found in a rehabilitation paradigm.

It's a severe indictment that this has been going on for this long without ever doing a proper validation on outcomes. More are needed, more rigorous, more direct and relying more on accurate data and patient feedback than clinicians, as there is a clear disconnect between both, with the patients being right and the clinicians generally being wrong for all the wrong reasons.