[“The idea of rehabilitation will have to be completely rethought for this illness” – Qualitative results of an online survey on patients’ experiences with inpatient rehabilitation for post COVID-19 condition (long 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.