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

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

 

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.

 

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!