Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID, 2022, Ziegler et al

[Wyva]

Abstract

Background
Long-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce.

Objective
The present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected.

Methods
This citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long COVID Working Group (25 persons with Long COVID, four patients with myalgic encephalomyelitis/chronic fatigue syndrome and one relative) were formed.

The study included four activities: three remote meetings and one online survey. First, Board members identified the needs and research questions. Second, Working Group members and persons affected by Long COVID (241 respondents, 85.5% with Long COVID, 14.5% with myalgic encephalomyelitis/chronic fatigue syndrome and 7.1% relatives) evaluated the research questions on a 1–5 Likert scale using an online survey. Then the Board gave feedback on this evaluation. Finally, Board members set the priorities for research through voting and discussion.

Results
Sixty-eight research questions were generated by the Board and categorised into four research domains (medicine, healthcare services, socioeconomics and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (standard deviation = 1.16) for sex-specific diagnostics to 4.86 (standard deviation = 0.41) for medical questions on treatment.

Five topics were prioritised: “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals” and “prevalence of Long COVID in children and adolescents”.

Conclusions
To our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.

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Plain Language Summary


Research shows that about one in five adults may experience lasting symptoms months after their initial coronavirus infection. Persons with Long COVID have various health problems and doctors often do not know their patients’ most urgent needs. The project directly involved people with Long COVID who were asked to express, discuss and rank how research could meet their needs. For that, a Board and a Working Group were formed to take part in three online board meetings and one online questionnaire.

In the meetings, the Board formulated 68 research questions, which fall into four research areas: (1) medicine, (2) healthcare services, (3) socioeconomics and (4) burden of disease. The Working Group and other persons affected by Long COVID ranked the importance of these 68 research questions using an online questionnaire. Most questions were ranked as somehow or very important, confirming the relevance of the selected research questions for patients with Long COVID.

Finally, the Board selected its top five research topics: “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals” and “prevalence of Long COVID in children and adolescents”. This result will help prioritise and finance future research that is valued and needed by people with Long COVID.

Key Points

For persons affected by Long COVID, being diagnosed in a timely and correct manner seemed to be one of the biggest challenges. In addition to a clear diagnosis, those affected by Long COVID are currently missing adequate treatment options and access to adequate care that meets their multi-dimensional needs.

Research priorities most important to persons affected by Long COVID were “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals” and “prevalence of Long COVID in children and adolescents”.

The five identified research priorities may guide and justify future funding allocation and serve as a model for a new framework for patient-centred citizen-driven research agendas.

Open access: https://link.springer.com/article/10.1007/s40271-022-00579-7

 

[Denise]

I wonder why they use "chronic fatigue syndrome" or "CFS" in the research questions. (for example, A2.1, A3.11, B4.7)

 

[rvallee]

Five topics were prioritised: “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals” and “prevalence of Long COVID in children and adolescents”.

I see one topic here. There is only one, it's the thing that's missing: professional healthcare. They're all variations, or facets, of the same thing. But it's so absent, so glaring in its lack of presence, that in listing the top 5 themes, all 5 add up to the same. Although I guess they did not allow research to be a valid answer, as it's always the #1 answer.

There have been a several of those already. They all concluded the same things. None of those things are happening. In fact they are blocked at the highest level. I saw a quoted tweed passing this morning from French physicians involved in healthcare authorities and they talked about Long Covid in meetings, how it was a subject of mockery, "echoes of fibromyalgia" or "the new chronic Lyme". There is absolutely no will to do any of this within healthcare systems. As dogmatic as the Catholic church vs. Galileo.

And of course this is exactly what we've always demanded, going back decades. The need isn't confusing, it's refused, denied. And no one has to face accountability, no one provides oversight, except perhaps authorities who mock this very issue at their meetings.

Seriously healthcare needs transformational change of a similar scale as going from old authoritarian systems to a representative democracy accountable to its constituents. The gap is that large, as wide as going from a society that does not respect basic human rights to one that makes them a core component of its constitution.