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. Supplementary Information The online version contains supplementary material available at 10.1007/s40271-022-00579-7.
When it comes to humans and the necessity for their young ones' medical treatments, the parental responsibility is crucial. The decisions made by parents involve the legal aspects as well as welfare aspects, respectively. Pet animals are usually classified as property in the European Union, but pets are the same as kids regarding medical treatments and illnesses or diseases. In that case, the decisions are made by their owners, posing a legal challenge only if the proposed treatment can trigger damage or needless pain, as defined by the Law on pet animals' welfare. In this article, there will be discussed the best interests both in legal and welfare aspects of decisions being made in the medical treatments of the pets by their owners. Reaching the choice of pets' medical treatments will primarily be focused on pets protection and welfare avoiding unnecessary pain, which is in the pets` best overall welfare interests. While the Statute law is not a mandatory one considering the pets' best interests, this article might be a useful resource for professional veterinarians and practitioners. At the same time, this article regards of the best interests of the pets and it can be integrated into the existing ethical frameworks for making medical decisions and more humane treatment of pet animals.
Objectives: To identify research priorities of people with Long COVID. Design: Citizen science study following an iterative process of patient needs identification, evaluation and prioritization. A Long COVID Citizen Science Board and a Long COVID Working Group were formed. Setting: Online participation with four activities: three remote meetings and one online survey. First, board members identified needs and research questions. Second, working group members and persons affected by Long COVID 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. Participants: 28 Long COVID Citizen Science Board members: 21 with Long COVID, and 7 with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 30 Long COVID Working Group members: 25 with Long COVID, 4 ME/CFS patients, and 1 relative. 241 online survey respondents: 85.5% with Long COVID, 14.5% ME/CFS patients, and 7.1% relatives. Main outcome measures: Prioritization of Long COVID–related research questions. Results: 68 research questions were generated by the board and categorized into four research domains (medicine, health care services, socio-economics, and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (SD = 1.16) for sex–specific diagnostics to 4.86 (SD = 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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