Prevalence of orthostatic intolerance in Long Covid clinic patients - A multicentre observational study (preprint)

PurposeOrthostatic 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. MethodsParticipants 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. Results277 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. ConclusionMore 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

Reducing variation in the quality of long covid care: Lessons from a national quality improvement collaborative and multi-site ethnography (preprint)

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.

Protocol for mixed-method study by LOng COvid Multidisciplinary consortium: Optimising Treatments and servIces acrOss the NHS (LOCOMOTION) (preprint)

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 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 analysis This 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 dissemination LOCOMOTION 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 registration ClinicalTrials.gov NCT05057260 ; ISRCTN15022307 .