Julie Lorraine Darbyshire

Background: Long Covid (LC) is associated with long‐term health impacts that require ongoing support from healthcare services. We aimed to gain insights into patients' perceptions of their ongoing symptoms of LC, the effect on daily living and vocation, perceptions of what helps with LC recovery, as well as LC care pathways and ongoing care needs. Methods: An online survey was sent to 513 participants who had used one of three LC services across England and Wales between 2020 and 2024. Participants were invited to share their experiences. We employed a mixed‐methods approach for data analysis, synthesising findings from quantitative and qualitative data. All data shared between sites was de‐identified. Results: 269 (52.4%) participants completed the survey. The mean age was 52.7 (sd ± 12.0), 69.1% female and 55.0% were White‐British. The mean duration since initial SARS‐CoV‐2 infection was over 3 years (1204.4 ± 275.7 days). The Post‐Covid Functional Status (PCFS) scale indicated that most participants (94.1%, n = 253) had not fully recovered. When employing a global rate of change scale, 39.0% ( n = 96) of 246 responders indicated they are still making improvements with respect to their recovery; 40.7% ( n = 100) had plateaued, and 20.3% ( n = 50) reported a worsening trajectory. Those with ongoing symptoms described fatigue 83.0% ( n = 210), cognitive dysfunction 58.5% ( n = 148) and breathlessness or wheezing 43.9% ( n = 111) most frequently. Of those who responded, 20.8% ( n = 48) were ‘working as prior to their initial LC infection’ and 25.5% ( n = 59) were currently ‘unable to work’. Almost half (44.3%; n = 86) were no longer receiving care whilst also reporting unmet care needs. In total, 62.7% ( n = 126) of participants indicated unmet care needs, and qualitative analysis indicated five overarching domains as having an important impact on long‐term LC recovery and ongoing healthcare needs. These were Living with LC, LC interventions and recovery, Approach to the delivery of care, Insufficient support and Suggestions and improvement. Conclusion: This study indicates the extent to which individuals continue to experience ongoing symptoms of LC, including aspects related to recovery and vocational impact, highlighting the potential widening gap between the ongoing need to support those living with LC and the limited provision of care. Patient or Public Contribution: The survey was co‐produced with Experts by Experience, who had previously attended an LC service and members of the Patient Advisory Group within the Locomotion Consortium. Collaboration and involvement continued throughout the study, including analysis, interpretation and writing processes. Clinical Trial Registration: Study registration details are available at ClinicalTrials.gov : NCT05057260 and ISRCTN: 15022307.

Long covid (persistent COVID‐19) is a new disease with contested aetiology and variable prognosis. We report a 2‐year ethnography of UK long covid clinics. Using a preformative lens, we show that multidisciplinary teams (MDTs) built working knowledge based on shared practices, mutual trust, distributed cognition (e.g. emails, record entries), relational knowledge of what was at stake for the patient, and harnessing uncertainty to open new discursive spaces. Most long covid MDTs performed the working knowledge of ‘rehabilitation’, a linked set of practices oriented to ensuring that the patient understood and strove to ‘correct’ maladaptive physiological responses (e.g. through breathing exercises) and pursued recovery goals, supported by physiotherapists, psychologists and generalist clinicians. Some MDTs with a higher proportion of doctors (e.g. cardiologists, neurologists, immunologists) enacted the working knowledge of ‘microscopic damage’, seeking to elucidate and rectify long covid’s underlying molecular and cellular pathology. They justified non‐standard investigations and medication in selected patients by co‐constructing an evidentiary narrative based on biological mechanisms. Working knowledge was ontologically concordant within MDTs but sometimes discordant between MDTs. Overt ontological conflict occurred mostly when patients attending ‘rehabilitation’ clinics invoked the working knowledge of microscopic damage that had been generated and circulated in online support communities.

Rationale Intensive care units (ICUs) admit the most severely ill patients. Once these patients are discharged from the ICU to a step-down ward, they continue to have their vital signs monitored by nursing staff, with Early Warning Score (EWS) systems being used to identify those at risk of deterioration. Objectives We report the development and validation of an enhanced continuous scoring system for predicting adverse events, which combines vital signs measured routinely on acute care wards (as used by most EWS systems) with a risk score of a future adverse event calculated on discharge from the ICU. Design A modified Delphi process identified candidate variables commonly available in electronic records as the basis for a ‘static’ score of the patient’s condition immediately after discharge from the ICU. L1-regularised logistic regression was used to estimate the in-hospital risk of future adverse event. We then constructed a model of physiological normality using vital sign data from the day of hospital discharge. This is combined with the static score and used continuously to quantify and update the patient’s risk of deterioration throughout their hospital stay. Setting Data from two National Health Service Foundation Trusts (UK) were used to develop and (externally) validate the model. Participants A total of 12 394 vital sign measurements were acquired from 273 patients after ICU discharge for the development set, and 4831 from 136 patients in the validation cohort. Results Outcome validation of our model yielded an area under the receiver operating characteristic curve of 0.724 for predicting ICU readmission or in-hospital death within 24 hours. It showed an improved performance with respect to other competitive risk scoring systems, including the National EWS (0.653). Conclusions We showed that a scoring system incorporating data from a patient’s stay in the ICU has better performance than commonly used EWS systems based on vital signs alone. Trial registration number ISRCTN32008295.

Introduction: Long COVID (LC) is a global public health crisis affecting more than 70 million people. There is emerging evidence of different pathophysiological mechanisms driving the wide array of symptoms in LC. Understanding the relationships between mechanisms and symptoms helps in guiding clinical management and identifying potential treatment targets. Methods: This was a mixed-methods systematic review with two stages: Stage one (Review 1) included only existing systematic reviews (meta-review) and Stage two (Review 2) was a review of all primary studies. The search strategy involved Medline, Embase, Emcare, and CINAHL databases to identify studies that described symptoms and pathophysiological mechanisms with statistical analysis and/or discussion of plausible causal relationships between mechanisms and symptoms. Only studies that included a control arm for comparison were included. Studies were assessed for quality using the National Heart, Lung, and Blood Institute quality assessment tools. Results: 19 systematic reviews were included in Review 1 and 46 primary studies in Review 2. Overall, the quality of reporting across the studies included in this second review was moderate to poor. The pathophysiological mechanisms with strong evidence were immune system dysregulation, cerebral hypoperfusion, and impaired gas transfer in the lungs. Other mechanisms with moderate to weak evidence were endothelial damage and hypercoagulation, mast cell activation, and auto-immunity to vascular receptors. Conclusions: LC is a complex condition affecting multiple organs with diverse clinical presentations (or traits) underpinned by multiple pathophysiological mechanisms. A ‘treatable trait’ approach may help identify certain groups and target specific interventions. Future research must include understanding the response to intervention based on these mechanism-based traits.

Background: The frequency at which patients should have their vital signs (e.g. blood pressure, pulse, oxygen saturation) measured on hospital wards is currently unknown. Current National Health Service monitoring protocols are based on expert opinion but supported by little empirical evidence. The challenge is finding the balance between insufficient monitoring (risking missing early signs of deterioration and delays in treatment) and over-observation of stable patients (wasting resources needed in other aspects of care). Objective: Provide an evidence-based approach to creating monitoring protocols based on a patient’s risk of deterioration and link these to nursing workload and economic impact. Design: Our study consisted of two parts: (1) an observational study of nursing staff to ascertain the time to perform vital sign observations; and (2) a retrospective study of historic data on patient admissions exploring the relationships between National Early Warning Score and risk of outcome over time. These were underpinned by opinions and experiences from stakeholders. Setting and participants: Observational study: observed nursing staff on 16 randomly selected adult general wards at four acute National Health Service hospitals. Retrospective study: extracted, linked and analysed routinely collected data from two large National Health Service acute trusts; data from over 400,000 patient admissions and 9,000,000 vital sign observations. Results: Observational study found a variety of practices, with two hospitals having registered nurses take the majority of vital sign observations and two favouring healthcare assistants or student nurses. However, whoever took the observations spent roughly the same length of time. The average was 5:01 minutes per observation over a ‘round’, including time to locate and prepare the equipment and travel to the patient area. Retrospective study created survival models predicting the risk of outcomes over time since the patient was last observed. For low-risk patients, there was little difference in risk between 4 hours and 24 hours post observation. Conclusions: We explored several different scenarios with our stakeholders (clinicians and patients), based on how ‘risk’ could be managed in different ways. Vital sign observations are often done more frequently than necessary from a bald assessment of the patient’s risk, and we show that a maximum threshold of risk could theoretically be achieved with less resource. Existing resources could therefore be redeployed within a changed protocol to achieve better outcomes for some patients without compromising the safety of the rest. Our work supports the approach of the current monitoring protocol, whereby patients’ National Early Warning Score 2 guides observation frequency. Existing practice is to observe higher-risk patients more frequently and our findings have shown that this is objectively justified. It is worth noting that important nurse–patient interactions take place during vital sign monitoring and should not be eliminated under new monitoring processes. Our study contributes to the existing evidence on how vital sign observations should be scheduled. However, ultimately, it is for the relevant professionals to decide how our work should be used. Study registration: This study is registered as ISRCTN10863045. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/05/03) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 6. See the NIHR Funding and Awards website for further award information.

Purpose Orthostatic intolerance (OI), including postural orthostatic tachycardia syndrome (PoTS) and orthostatic hypotension (OH), are often reported in long covid, but published studies are small with inconsistent results. We sought to estimate the prevalence of objective OI in patients attending long covid clinics and healthy volunteers and associations with symptoms and comorbidities. Methods Participants were recruited from 8 UK long covid clinics, and healthy volunteers from general population. All undertook standardised National Aeronautics and Space Administration Lean Test (NLT). Participants’ history of typical OI symptoms (e.g. dizziness, palpitations) prior to and during the NLT were recorded. Results 277 long covid patients and 50 frequency-matched healthy volunteers were tested. Healthy volunteers had no history of OI symptoms or PoTS, 10% had asymptomatic OH. 130 (47%) long covid patients had previous history of OI symptoms and 144 (52%) developed symptoms during the NLT. 41 (15%) had an abnormal NLT, 20 (7%) met criteria for PoTS and 21 (8%) had OH. Of patients with an abnormal NLT, 45% had no prior symptoms of OI. Relaxing the diagnostic thresholds for PoTS from two consecutive to one reading, resulted in 11% of long covid participants meeting criteria for PoTS, but not in healthy volunteers. Conclusion More than half of long covid patients experienced OI symptoms during NLT and more than one in ten patients met the criteria for either PoTS or OH, half of whom did not report previous typical OI symptoms. We recommend all patients attending long covid clinics are offered an NLT and appropriate management commenced. Trial registration numbers NCT05057260, ISRCTN15022307

Context Long covid (post covid-19 condition) is a complex condition with diverse manifestations and uncertain prognosis. There is wide variation in how patients are investigated and managed. There have been calls for formal quality standards so as to reduce a so-called “postcode lottery” of care. We aimed to examine the nature of quality in long covid care and reduce unwarranted variation in care provided by long covid services. Methods In a mixed-method study (2021-2023), we ran a quality improvement collaborative across 10 UK sites. We also gathered data on the origins and current context of each clinic, interviewed staff and patients, and observed 12 clinics (52 consultations) and 34 multidisciplinary team (MDT) meetings (230 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles, reducing unwarranted variation) and philosophy of knowledge. Results The collaborative made progress towards standardizing assessment and management in some topics, but much variation remained. Clinics had different histories and path-dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including (in most clinics) a high proportion of patients with comorbidities. Dimensions of quality prioritized by patients related to the service (e.g. accessibility, ease of navigation), and human qualities of staff (e.g. attentiveness, compassion). A key route to quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic reasoning, in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients). Conclusion Not all variation in long covid services is unwarranted. Largely because long covid’s manifestations are so varied, universal ‘evidence-based’ standards are hard to define and implement. In this complex condition, quality improvement resources may be better spent supporting team-based learning locally than attempting to standardize care across widely differing services. Trial registration NCT05057260, ISRCTN15022307.

Objective To develop and validate a questionnaire to assess the usability of clinical decision support systems (CDSS) and to assist in the early identification of usability issues that may impact patient safety and quality of care. Design Mixed research methods were used to develop and validate the questionnaire. The qualitative study involved scale item development, content and face validity. Pilot testing established construct validity using factor analysis and facilitated estimates for reliability and internal consistency using the Cronbach’s alpha coefficient. Setting Two hospitals within a single National Health Service Trust. Participants We recruited a panel of 7 experts in usability and questionnaire writing for health purposes to test content validity; 10 participants to assess face validity and 78 participants for the pilot testing. To be eligible for this last phase, participants needed to be health professionals with at least 3 months experience using the local hospital electronic patient record system. Results Feedback from the face and content validity phases contributed to the development and improvement of scale items. The final Healthcare Systems Usability Scale (HSUS) proved quick to complete, easy to understand and was mostly worded by potential users. Exploratory analysis revealed four factors related to patient safety, task execution, alerts or recommendations accuracy, the effects of the system on workflow and ease of system use. These separate into four subscales: patient safety and decision effectiveness (seven items), workflow integration (six items), work effectiveness (five items) and user control (four items). These factors affect the quality of care and clinician’s ability to make informed and timely decisions when using CDSS. The HSUS has a very good reliability with global Cronbach’s alpha 0.914 and between 0.702 and 0.926 for the four subscales. Conclusion The HSUS is a valid and reliable tool for usability testing of CDSS and early identification of usability issues that may cause medical adverse events.

Introduction Long 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 self-management and providing guidance and decision support for primary care. We aim to establish a ‘gold standard’ of care by systematically analysing current practices, iteratively improving pathways and systems of care. Methods and analysis This mixed-methods, multisite study is informed by the principles of applied health services research, quality improvement, co-design, outcome measurement 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: workstream 1 (qualitative research, up to 100 participants), 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, return to work and peer support; workstream 2 (quantitative research, up to 5000 participants), patient self-management at home, technology-supported monitoring and validation of condition-specific outcome measures and workstream 3 (quantitative research, up to 5000 participants), generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and analysis of costs. Study governance includes an active patient advisory group. Ethics and dissemination LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Participants will provide informed consent. Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers. Trial registration number NCT05057260, ISRCTN15022307.