Long COVID Citizen Scientists – Developing a needs-based research agenda by persons affected by Long COVID

ObjectivesTo identify research priorities of people with Long COVID.DesignCitizen 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.SettingOnline 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.Participants28 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 measuresPrioritization of Long COVID-related research questions.Results68 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”.ConclusionsTo 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.What is already known on this topicLong-term health consequences following acute SARS-CoV-2 infection, referred to as post COVID-19 condition by WHO or as Long COVID by affected people, are increasing, with population-based prevalence estimates for adults at around 20%.Long COVID is associated with fatigue, shortness of breath, cognitive impairment, sleep disorders, pain and other health problems.There is little evidence about the needs of persons affected by Long COVID, and it is not clear which research questions should be prioritized to address these needs and help patients and their clinicians make informed and shared decisions about their care.What this study addsResearch priorities most important to persons affected by Long COVID are “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”.Our study may serve as model for a new framework for patient-centred citizen-driven research agendas and as guidance for funding bodies.

Facilitators and Barriers of a Chronic Care Management Intervention Addressing Diabetes Among Mexican-Origin Adults

Background Chronic care management (CCM) and community health worker (CHW) interventions hold promise for managing complex chronic conditions such as diabetes and related comorbidities. This qualitative study examines facilitators and barriers to the implementation of an expanded CCM intervention that explicitly incorporated program staff, clinic staff, CHWs, and partnerships with community-based organizations to enhance diabetes management among Mexican-origin adults. Method Grounded theory was used to analyze interviews conducted in 2018 with 24 members of the CCM team, including program staff, clinic staff, and community-based program partner staff. Results Three themes emerged that characterize perceived facilitators and barriers to CCM implementation, based on analysis of interviews: (1) understanding roles and responsibilities across organizations, (2) building relationships across organizations, and (3) coordinating delivery of the model among different organizations. First, structured meetings and colocated workspaces enhanced understanding of CCM roles for each team member and across organizations. Barriers to understanding CCM roles were more common during the early stages of CCM implementation and amongst staff who did not participate in regular meetings. Second, regular meetings facilitated development of relationships across organizations to enhance implementation of the CCM model. In contrast, limited relationship building among some CCM team members served as a barrier to implementation. Third, CHWs and case review meetings fostered communication and coordination across the CCM model. Conclusions Results suggest the importance of understanding roles and building relationships among multidisciplinary teams to ensure effective communication and coordination of care.

The work of having a chronic condition: development and psychometric evaluation of the distribution of co-care activities (DoCCA) scale

Background Chronic care involves multiple activities that can be performed by individuals and healthcare staff as well as by other actors and artifacts, such as eHealth services. Thus, chronic care management can be viewed as a system where the individual interacts with people and eHealth services performing activities to maintain or improve health and functioning, called co-care. Yet, the system perspective is not reflected in concepts such as person-centered care and shared decision making. This limits the understanding of individuals’ global experience of chronic care management and subsequently the ability to optimize chronic care. The aim of this study was threefold: (1) to propose a theory-based operationalization of co-care for chronic care management, (2) to develop a scale to measure co-care as a distributed system of activities, and (3) to evaluate the scale’s psychometric properties. With the theory of distributed cognition as a theoretical underpinning, co-care was operationalized along three dimensions: experience of activities, needs support, and goal orientation. Methods Informed by the literature on patient experiences and work psychology, a scale denoted Distribution of Co-Care Activities (DoCCA) was developed with the three conceptualized dimensions, the activities dimension consisting of three sub-factors: demands, unnecessary tasks, and role clarity. It was tested with 113 primary care patients with chronic conditions in Sweden at two time points. Results A confirmatory factor analysis showed support for a second-order model with the three conceptualized dimensions, with activities further divided into the three sub-factors. Cronbach’s alpha values indicated a good to excellent reliability of the subscales, and correlations across time points with panel data indicated satisfactory test-retest reliability. Convergent, concurrent and predictive validity of the scale were, overall, satisfactory. Conclusions The psychometric evaluation supports a model consisting of activities (demands, unnecessary tasks, and role clarity), needs support and goal orientation that can be reliably measured with the DoCCA scale. The scale provides a way to assess chronic care management as a system, considering the perspective of the individuals with the chronic condition and how they perceive the work that must be done, across situations, either by themselves or through healthcare, eHealth, or other means.

What’s the Name of the Game? The Impact of eHealth on Productive Interactions in Chronic Care Management

Chronic care management is dependent on productive interactions between patients and healthcare professionals. Digital health technologies (eHealth) open up new possibilities for improving the quality of care, but there is a limited understanding of what productive interactions entail. This study explores characteristics of productive interactions to support self-care and healthcare in the context of eHealth use in diabetes care. We collected qualitative data based on interviews with nurses and responses to open-ended survey questions from patients, prior to and post using an eHealth service for self-monitoring and digital communication. We found that eHealth’s influence on productive interactions was characterized by unconstrained access, health parameter surveillance, and data-driven feedback, with implications for self-care and healthcare. Our findings indicate that eHealth perforates the boundaries that define interactions under traditional, non-digital care. This was manifested in expressions of uncertainty and in blurred boundaries between self-care and healthcare. We conclude that the attainment of a sustainable eHealth ecosystem will require healthcare to acknowledge eHealth as a disruptive change that may require re-organization to optimally support the productive use of eHealth services for both patients and staff, which includes agreement on new routines, as well as social interaction rules.