Four Years in, What Are the Research Priorities for [LC]? A Research Priority-Setting Partnership Between People With..., 2024, Grant et al

[Nightsong]

Introduction
Long COVID is a life-limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We set out to identify current research priorities for people with Long COVID, carers, healthcare professionals and researchers.

Methods
A systematic literature review and previous Long COVID priority-setting exercises identified three broad under-researched areas of Long COVID research within the fields of Public Health and Health Services Research: symptoms; managing day-to-day life; and the emotional impact of Long COVID. We disseminated an elicitation survey that asked for research questions in these areas; responses were analysed and summarised into 42 research questions. A survey was then disseminated, asking respondents to prioritise these 42 questions. Workshops were held with people with Long COVID, carers, healthcare professionals and researchers to analyse responses and agree the top 10 priorities.

Results
The top priorities in order were pharmacological treatment of Long COVID; understanding the pathophysiology; nonpharmacological symptom management; improving public and professional understanding of Long COVID; understanding of the long-term risks of Long COVID; improving financial and social supports; improving understanding of postviral syndromes; diagnostics; service redesign/pathways; and the well-being of children with Long COVID.

Conclusion
Four years into the pandemic, there is an emphasis on the need for research on treatment, understanding and support for people living with Long COVID.

Link | PDF (Health Expectations, October 2024, open access)

 

[Creekside]

Darn, I was hoping to see some specific biological pathways, and pathways that were ruled out by prior studies. This seems more like a major committee to decide what kind of donuts should be ordered for future committee meetings.

 

[rvallee]

That's everything and the kitchen sink. As in: what work needs to be done? The work. Literally the whole work. There isn't a single thing that needs to be done that has been checked off the list. Not one.

They aren't just the same priorities as on day -1, they are the exact same priorities that have always been refused to us, paving the way for the current gridlock. That would make it about day -18K and counting, when generously giving 40 years of head start.

At this point the bigger question relating to the root cause needs to be asked instead: why has there been exactly zero progress in close to 5 years? Because there are clearly obstacles in the way. Obstacles preventing the work from being effective. This is simply not normal.

Then again, for illnesses medicine doesn't understand, this is actually what normal is. Which is really the root cause problem here.

 

[Creekside]

At this point the bigger question relating to the root cause needs to be asked instead: why has there been exactly zero progress in close to 5 years?

Absolutely, but that's the kind of question that those people don't want to deal with. Maybe the question goes higher, to "Why does the system avoid dealing with important questions?"