Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach, 2023, Owen, Faghi et al

Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach

Background
Current approaches to support patients living with post-COVID condition, also known as Long COVID, are highly disparate with limited success in managing or resolving a well-documented and long-standing symptom burden. With approximately 2.1 million people living with the condition in the UK alone and millions more worldwide, there is a desperate need to devise support strategies and interventions for patients.

Methods
A three-round Delphi consensus methodology was distributed internationally using an online survey and was completed by healthcare professionals (including clinicians, physiotherapists, and general practitioners), people with long COVID, and long COVID academic researchers (round 1 n = 273, round 2 n = 186, round 3 n = 138). Across the three rounds, respondents were located predominantly in the United Kingdom (UK), with 17.3–15.2% (round 1, n = 47; round 2 n = 32, round 2 n = 21) of respondents located elsewhere (United States of America (USA), Austria, Malta, United Arab Emirates (UAE), Finland, Norway, Malta, Netherlands, Iceland, Canada, Tunisie, Brazil, Hungary, Greece, France, Austrailia, South Africa, Serbia, and India). Respondents were given ∼5 weeks to complete the survey following enrolment, with round one taking place from 02/15/2022 to 03/28/22, round two; 05/09/2022 to 06/26/2022, and round 3; 07/14/2022 to 08/09/2022. A 5-point Likert scale of agreement was used and the opportunity to include free text responses was provided in the first round.

Findings
Fifty-five statements reached consensus (defined as >80% agree and strongly agree), across the domains of i) long COVID as a condition, ii) current support and care available for long COVID, iii) clinical assessments for long COVID, and iv) support mechanisms and rehabilitation interventions for long COVID, further sub-categorised by consideration, inclusion, and focus. Consensus reached proposes that long COVID requires specialised, comprehensive support mechanisms and that interventions should form a personalised care plan guided by the needs of the patients. Supportive approaches should focus on individual symptoms, including but not limited to fatigue, cognitive dysfunction, and dyspnoea, utilising pacing, fatigue management, and support returning to daily activities. The mental impact of living with long COVID, tolerance to physical activity, emotional distress and well-being, and research of pre-existing conditions with similar symptoms, such as myalgic encephalomyelitis, should also be considered when supporting people with long COVID.

Interpretation
We provide an outline that achieved consensus with stakeholders that could be used to inform the design and implementation of bespoke long COVID support mechanisms.

https://www.sciencedirect.com/science/article/pii/S258953702300322X

 

"A further finding of this study is the consideration of symptoms of ME/CFS and PEM, also present in long COVID.42 The panel agreed that individuals experiencing symptoms consistent with ME/CFS and/or PEM should be thoroughly examined and monitored before being encouraged to participate in physical activities or exercise. However, the panel did not reach consensus that when regular physical activities do not provoke symptoms of PESE, then those with long COVID can participate in their regular physical activities and was therefore rejected in round three.

Similarly, in line with existing research that exercise may be detrimental for people with long COVID and ME/CFS, or PEM43,44 the panel disagreed that long COVID support mechanisms should include low-level physical activities that result in moderate increases in heart rate, activities incorporating muscle use, and support to increase flexibility and functional movement proficiency, but plans should be individualised and tailored to the needs of the patient. PESE and PEM are commonly experienced by those with long COVID44 and presents a significant challenge such as reduced capacity to work, and reduced physical and social functioning.45

Furthermore, experts agreed that there should be consideration of the research of pre-existing conditions with similar symptoms such as ME/CFS, but not respiratory conditions such as COPD, asthma, and pneumonia."

 

It annoys me to no end that every single time professionals put a serious effort, they always reach as conclusions exactly what we have been begging for decades, and it bothers no one that we have been vilified over it. Demanding this has been used against us to justify denying it and re-attributed as some imaginary illness mechanism.

And it's not even as good as what we do. We really need humility above all else here, it's still the big blocker.

But without research this will lead nowhere. It's still severely lacking. Without a biological understanding, medicine is almost always worse than amateurs, often massively so.