Development of an expectation management intervention for patients with Long COVID: A focus group study with affected patients 2025 Reinke et al

Abstract

Background
A significant number of individuals who have contracted SARS-CoV-2 report persistent somatic symptoms after the infection has resolved. Evidence-based treatment options for Long COVID are lacking to date. To ensure that an expectation management intervention, designed for the research project SOMA.COV, addresses relevant patient needs as well as to promote treatment acceptance and adherence, a participatory approach was chosen.

Objective
The aim of the present study was to explore needs and wishes of patients with Long COVID regarding the preliminary version of an expectation management intervention and to thereby inform the further development of the treatment manual.

Methods
Twenty-two patients affected by Long COVID participated in one of four focus groups in June and July 2023. Participants were presented with the draft content of a four-session expectation management intervention. Feedback was audio-recorded, transcribed, and analyzed using thematic analysis.

Results
Thirteen themes relating to the main components of the intervention manual were developed. Large parts of the manual received overall positive feedback, including psychoeducation on the biopsychosocial etiology of the condition, elements of cognitive restructuring, and an imagination exercise. Patients’ response to the presented vicious circle of fear and a behavior change exercise was mixed. Modifications to the manual were made in response to patients’ feedback.

Conclusion
Patients with Long COVID provided positive feedback on an expectation management intervention while also highlighting important adaptations necessary for this patient group. The study results informed the finalization of the treatment manual within the SOMA.COV project, which investigates the effectiveness of this intervention for patients with Long COVID in a three-armed randomized controlled trial.

Open access

 

However, selection biases must be taken into account when interpreting the results.

First, a significant proportion of the sample was recruited from the psychosomatic outpatient clinic at the UKE, i.e., patients who have already actively presented in a psychosomatic setting, meaning that the perspectives of individuals who are critical of biopsychosocial interactions or of those who are too impaired to participate in a three-hour focus group may be missing.

Similarly, the delivery of the material in the focus groups required a high degree of cognitive effort and perspective-taking. Given that concentration difficulties are a common symptom of Long COVID [55], the voices of those less impaired may be overrepresented..

Furthermore, most participants had attended, and some continued to attend, a Long COVID group therapy including elements of CBT. We did not control for additional therapy experiences, which may have influenced the individual use and approval of specific CBT concepts as well as the perspectives on the intervention manual presented.

Also, all participants had a high level of education and were fluent in German language, which may have contributed to a better understanding of the content provided. In light of less educated groups being disproportionately affected by Long COVID [56] as well by persistent somatic symptoms in general [11], this limitation should be considered.

Finally, the results were not shared with the participants, which prevented further discussion and validation of the findings by those involved.

 

Bernd Löwe:
He is President of the German College of Psychosomatic Medicine (DKPM) (unpaid) since March 2024 and was a member of the Board of the European Association of Psychosomatic Medicine (EAPM) (unpaid) until 2022. He is member of the EIFFEL Study Oversight Committee (unpaid).

 

Frequent feedback by the participants of the focus groups concerned activity pacing as an element missing in the preliminary intervention manual. Because of its symptomatic overlap with ME/CFS [50], pacing has been discussed as a coping strategy for Long COVID.

Currently, research into the effects of pacing for Long COVID is limited [51]. While recent studies favor cautious exercise in Long COVID [52], the definition and delivery of pacing approaches for ME/CFS varies widely, including the question whether an increase in activity should be part of it.

Consequently, meaningful conclusions cannot yet be drawn regarding its effectiveness in reducing somatic symptom burden [53], which is why pacing was not included in the SOMA.COV intervention manual.

At the same time, pacing approaches seem to go along with high acceptance among those affected by Long COVID. Future research should investigate clearly defined pacing approaches for Long COVID in order to inform further intervention development.

52 is this study: https://www.s4me.info/threads/funct...inical-trial-2024-tryfonos-et-al.37969/page-2

 

Taking a look at the participants' comments, when you ignore the ones that simply parrot what they were told by the therapists, it's really absurd how there's basically zero overlap between the perspectives of the patients and the therapists. It's like two independent conversations happening with zero connection to each other.

So, as is tradition, they frame this as some participatory thing involving patients, but they direct the conversation about as much as an orchestra conductor, marveling at how the musicians are following the music on the sheets they put in front of them, as if it's all happening spontaneously.

We have clearly crossed the point at which official pseudoscience is actually worse than the non-official kind. It just replaces involving weird spiritual explanations with elaborate deceit and blatant manipulation.

 

If they didn't have double standards, they wouldn't have any. It's so absurd that this is considered normal. None of this is anywhere near close to being acceptable for professionals. But since it is accepted by professionals, then by definition it is.