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Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition (REGAIN study): multicentre randomised controlled trial

BMJ 2024; 384 doi: https://doi.org/10.1136/bmj-2023-076506 (Published 07 February 2024) Cite this as: BMJ 2024;384:e076506

Linked Editorial

Rehabilitation for post-covid-19 condition

Rapid Response:

Re: Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition (REGAIN study): multicentre randomised controlled trial -- Conclusions are concerning

Dear Editor

More than the study itself, I’m concerned about the sweeping conclusions made: “In adults with post-covid-19 condition, an online, home based, supervised, group physical and mental health rehabilitation programme was clinically effective at improving health related quality of life at three and 12 months compared with usual care.”

I’m a Long Covid patient who has been suffering from the illness for two years and four months. I am currently experiencing moderately severe symptoms, including Post Exertional Symptom Exacerbation (PESE) and cognitive dysfunction. When I engaged in similar weekly online programmes via the NHS, it made my condition worsen. There are many people in the long covid community who experienced similar worsening to rehab interventions like this. Naturally, I am quite concerned about the way the conclusion is phrased. It gives the impression that these interventions will help all patients with Long Covid. However, based on my own experience and the experience of hundreds of Long Haulers I regularly interact with in online spaces, this is not the case.

I feel it is important to highlight the limitations of this study so as not to mislead readers: headline findings should not be extrapolated to patients who cannot tolerate these interventions including those with PESE and those of moderate-severe, severe and very severe severities. This accounts for a significant proportion of Long Covid sufferers. Perhaps even the majority.

The conclusions seem to be drawn on a value of minimally important difference of 0.03 for the PROPr score which is lower than that generally accepted by the authors of this scale; their website suggests 0.04, and even mentions a conservative value of 0.08.

In terms of compliance 47.3% fully complied, whereas 90.2% of the control group fully complied with usual care, could the lower compliance be suggestive of PESE?

While there was improvement shown at 3 and 12 months, there was a lack of improvement seen at 6 months. Why was this not included in the over-arching findings and conclusion too?

Given the above and considering the heterogeneity of Long Covid disease, are these study results truly convincing of benefit?

Many thanks

Sarah (with assistance from my carer)

Competing interests: No competing interests

13 February 2024
Sarah E Louise
Student
London