 Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVIDSarah Ziegler (),
Alessia Raineri,
Vasileios Nittas,
Natalie Rangelov,
Fabian Vollrath,
Chantal Britt and
Milo A. Puhan
The Patient: Patient-Centered Outcomes Research, 2022, vol. 15, issue 5, No 6, 565-576 Abstract: 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. Date: 2022 Downloads: (external link) Related works: Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text Persistent link: https://EconPapers.repec.org/RePEc:spr:patien:v:15:y:2022:i:5:d:10.1007_s40271-022-00579-7 Ordering information: This journal article can be ordered from DOI: 10.1007/s40271-022-00579-7 Access Statistics for this article The Patient: Patient-Centered Outcomes Research is currently edited by Christopher I. Carswell More articles in The Patient: Patient-Centered Outcomes Research from Springer, International Academy of Health Preference Research |
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