ABSTRACT
Background and aimLong Covid is a significant public health concern with potentially negative implications for health inequalities. We know that those who are already socially disadvantaged in society are more exposed to COVID-19, experience the worst health outcomes and are more likely to suffer economically. We also know that these groups are more likely to experience stigma and discrimination and have negative healthcare experiences even before the pandemic. However, little is known about disadvantaged groups experiences of Long Covid and preliminary evidence suggests they may be under-represented in those who access formal care. We will conduct a pilot study in a defined geographical area (Camden, London, UK) to test the feasibility of a community-based approach of identifying Long Covid cases that have not been formally clinically diagnosed and have not been referred to Long Covid Specialist services. We will explore the barriers to accessing recognition, care and support, as well as experiences of stigma and perceived discrimination. MethodsThis protocol and study materials were co-produced with a Community Advisory Board (CAB) made up primarily of people living with Long Covid. Working with voluntary organisations, promotional material are co-developed and will be distributed in the local community with engagement from key community organisations and leaders to highlight Long Covid symptoms and invite those experiencing them to participate in the study if they are not formally diagnosed and accessing care. Awareness of Long Covid and symptoms, experiences of trying to access care, as well as stigma and discrimination will be explored through qualitative interviews with participants. Upon completion of the interviews, participants will be offered referral to the local social prescribing team to receive support that is personalised to them potentially including, but not restricted to, liaising with their primary care provider and the regional Long Covid clinic run by University College London Hospitals (UCLH). Ethics and disseminationEthical approval has been obtained from the Faculty of Medicine Ethics Committee and Research Integrity and Governance, University of Southampton. (reference number 72400). Findings will be reported in a report and submitted for peer-reviewed publication. Definitive methods of dissemination will be decided by the CAB. Summaries of the findings will also be shared on the STIMULATE-ICP website, locally in the study area and through social media. We will specifically target policy makers and those responsible for shaping and commissioning Long Covid healthcare services and social support such as NHSE England Long Covid Group.
ABSTRACT
IntroductionLong COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most do not have access to specialist long COVID services. We seek to optimise long COVID care both within and outside specialist clinics, including improving access, reducing inequalities, helping patients manage their symptoms effectively at home, and providing guidance and decision support for primary care. We aim to establish a gold standard of care by systematically analysing symptom clusters and current practices, iteratively improving pathways and systems of care, and working to disseminate better practices. Methods and analysisThis mixed-method, multi-site study is informed by the principles of applied health services research, quality improvement, co-design, and learning health systems. It was developed in close partnership with patients (whose stated priorities are prompt clinical assessment; evidence-based advice and treatment; and help with returning to work and other roles) and with front-line clinicians. Workstreams and tasks to optimise assessment, treatment and monitoring are based in three contrasting settings: [1] specialist management in 10 long COVID clinics across the UK, via a quality improvement collaborative, experience-based co-design and targeted efforts to reduce inequalities of access; [2] patient self-management at home, with technology-supported monitoring; and [3] generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and prioritisation criteria across the primary-secondary care interface, along with analysis of costs. Study governance includes an active patient advisory group. Ethics and disseminationLOCOMOTION is sponsored by the University of Leeds and approved by Yorkshire & The Humber - Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers to influence service specifications and targeted funding streams. Study registrationClinicalTrials.gov: NCT05057260; ISRCTN15022307.
ABSTRACT
Persistent symptoms lasting longer than 3 weeks are thought to affect 10-20% of patients following Covid 19 infection. No formal guidelines exist in the United Kingdom for treating long Covid patients and services are sporadic and variable, although additional funding is promised for their development. In this study narrative interviews and focus groups are used to explore the lived experience of 43 healthcare professionals with long Covid. These individuals see the healthcare system from both professional and patient perspectives thus represent an important wealth of expertise to inform service design. We present a set of co-designed quality standards highlighting equity and ease of access, minimal patient care burden, clinical responsibility, a multidisciplinary and evidence-based approach, and patient involvement and apply these to propose a potential care pathway model that could be adapted and translated to improve care of long Covid patients. Summary boxO_ST_ABSWhat is known?C_ST_ABS{blacksquare} Persistent symptoms ("long Covid") occur after Covid-19 in 10-20% of sufferers {blacksquare}Services to manage and rehabilitate patients with long Covid are not yet optimal {blacksquare}UK healthcare workers experience at least a threefold greater risk of Covid-19 infection and face significant occupational exposure {blacksquare}Healthcare workers with long Covid can offer important insights into service design and development What is the question?{blacksquare} What are the experiences of healthcare workers with long Covid and what are the implications from these for service development? What was found{blacksquare} Healthcare workers experienced a confusing novel condition that imposed high levels of uncertainty and a significant personal and professional impact. {blacksquare}Using professional contacts, patient- and professional Mindlines, support groups and Communities of Practice all helped to minimize this uncertainty and high quality therapeutic relationships were essential to cope with it. {blacksquare}Many experienced a lack of compassion during interactions with the healthcare system and were frustrated by challenges accessing, or absence of, appropriate services. {blacksquare}Suggestions for improvement included an integrated, multi-disciplinary assessment and rehabilitation service; a set of clinical quality standards; and co-created research and service development. What is the implication for practice now?{blacksquare} This study supports and extends the principles outlined in recently-developed NHS long Covid quality standards and will inform and support design of dedicated long Covid services.
ABSTRACT
BackgroundApproximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks. Patients call this "long Covid". We sought to document the lived experience of such patients, their accounts of accessing and receiving healthcare, and their ideas for improving services. MethodWe held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their personal stories and comment on others stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, the clinical relationship, access to care, and service redesign. ResultsThe sample was 70% female, aged 27-73 years, and comprised White British (74%), Asian (11%), White Other (7%), Black (4%), and Mixed (4%). 27 were doctors and 23 other health professionals. 10% had been hospitalised. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others felt "fobbed off"); and possible critical events (e.g. deterioration after being unable to access services). Emotional touch points in participants experiences informed ideas for improving services. ConclusionQuality principles for a long Covid service should include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services. Study registrationNCT04435041