LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK

Abstract:

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.

Source: Sivan M, Greenhalgh T, Darbyshire JL, Mir G, O’Connor RJ, Dawes H, Greenwood D, O’Connor D, Horton M, Petrou S, de Lusignan S, Curcin V, Mayer E, Casson A, Milne R, Rayner C, Smith N, Parkin A, Preston N, Delaney B; LOCOMOTION consortium. LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK. BMJ Open. 2022 May 17;12(5):e063505. doi: 10.1136/bmjopen-2022-063505. PMID: 35580970; PMCID: PMC9114312. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9114312/ (Full text)

Long covid in adults discharged from UK hospitals after covid-19: a prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol

Abstract:

Background: This study sought to establish the long-term effects of Covid-19 following hospitalisation.

Methods: 327 hospitalised participants, with SARS-CoV-2 infection were recruited into a prospective multicentre cohort study at least 3 months post-discharge. The primary outcome was self-reported recovery at least ninety days after initial Covid-19 symptom onset. Secondary outcomes included new symptoms, disability (Washington group short scale), breathlessness (MRC Dyspnoea scale) and quality of life (EQ5D-5L).

Findings: 55% of participants reported not feeling fully recovered. 93% reported persistent symptoms, with fatigue the most common (83%), followed by breathlessness (54%). 47% reported an increase in MRC dyspnoea scale of at least one grade. New or worse disability was reported by 24% of participants. The EQ5D-5L summary index was significantly worse following acute illness (median difference 0.1 points on a scale of 0 to 1, IQR: -0.2 to 0.0). Females under the age of 50 years were five times less likely to report feeling recovered (adjusted OR 5.09, 95% CI 1.64 to 15.74), were more likely to have greater disability (adjusted OR 4.22, 95% CI 1.12 to 15.94), twice as likely to report worse fatigue (adjusted OR 2.06, 95% CI 0.81 to 3.31) and seven times more likely to become more breathless (adjusted OR 7.15, 95% CI 2.24 to 22.83) than men of the same age.

Interpretation: Survivors of Covid-19 experienced long-term symptoms, new disability, increased breathlessness, and reduced quality of life. These findings were present in young, previously healthy working age adults, and were most common in younger females.

Source: Sigfrid L, Drake TM, Pauley E, Jesudason EC, Olliaro P, Lim WS, Gillesen A, Berry C, Lowe DJ, McPeake J, Lone N, Munblit D, Cevik M, Casey A, Bannister P, Russell CD, Goodwin L, Ho A, Turtle L, O’Hara ME, Hastie C, Donohue C, Spencer RG, Donegan C, Gummery A, Harrison J, Hardwick HE, Hastie CE, Carson G, Merson L, Baillie JK, Openshaw P, Harrison EM, Docherty AB, Semple MG, Scott JT; ISARIC4C investigators. Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol. Lancet Reg Health Eur. 2021 Sep;8:100186. doi: 10.1016/j.lanepe.2021.100186. Epub 2021 Aug 6. PMID: 34386785; PMCID: PMC8343377. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8343377/ (Full text)

Long covid: research must guide future management

Back in February 2021, the UK government announced that £18.5m is being invested into clinical research into long covid by UK Research and Innovation (UKRI).1 In light of public and medical concern about the long term effects of covid-19 infection, this is welcome.

In 1988, colleagues and I published an article in The BMJ called “Post viral fatigue: time for a new approach.”2 This was an attempt by young researchers to make the case that viewing the syndrome through a more unified mental-physical health lens and epidemiological orientation might counteract the increasingly polarised debate between patients with post-viral fatigue or myalgic encephalomyelitis (ME) and their doctors. We called for a clearer operational case definition, a biopsychosocial approach, and an end to emotive language all round. A generation later and our calls remain current.

Bodies including the National Institute for Health and Clinical Excellence (NICE), the Scottish Intercollegiate guidelines network (SIGN), the Royal College of General Practitioners (RCGP) and the Centres for Disease Control and Prevention (CDC) in the US have all attempted to operationally define persistent symptoms and disability after acute covid-19 illness.3 I think the term used by NICE—post-covid-19 syndrome—is a reasonable starting point. NICE’s definition includes the phrase “not attributable to alternative diagnoses.” This seems obvious, and yet is critical, as this should not be a catch-all category where any disorder with unexplained symptoms can be attached. For example, if a patient recovers from the acute respiratory illness, but remains short of breath and is found to have pulmonary fibrosis or pericarditis by accepted criteria, or, experiences brain fog and mental slowing, later linked to microvascular infarcts on MRI—can they be removed from the post-covid-19 cohort? I would say yes. Their condition may be unusual, and it may be serious, but it is not mysterious. These conditions add to the tally of morbidity caused by covid-19, but not to post-covid-19 syndrome. This, however, depends on patients getting access to the right assessments and investigations and there have been many calls from long covid patients to ensure that they have proper medical assessment of their symptoms.

We must not fall into the trap set by all “unexplained” symptoms: endless investigation by clinicians who then impart the “good news” that the test was normal. Because there is no accompanying positive explanation for the symptoms, this is perceived as implying, “it’s not real” or somehow worse, that “it’s all in your mind.” A devastating and embittering experience for many patients whose symptoms persist, and ultimately unhelpful in reaching a solution.

Read the rest of this article here: https://www.bmj.com/content/375/bmj.n3109

Source: Anthony S David. Long covid: research must guide future management. BMJ 2021;375:n3109. https://www.bmj.com/content/375/bmj.n3109

Incidence and risk factors of long COVID in the UK: a single-centre observational study

Abstract:

Background: Studies to evaluate long COVID symptoms and their risk factors are limited. We evaluated the presence of long COVID and its risk factors in patients discharged from a hospital with COVID-19 illness.

Methods: This observational study included 271 COVID-19 patients admitted between February and July 2020 in a hospital in the UK. The primary outcome measure was to assess the duration and severity of long COVID and its predictors at 3, 6 and 9 months. Logistic regression was performed to assess the potential risk factors for long COVID.

Results: Out of 89 patients interviewed, 55 (62%) had long COVID for 3 months, 46 (52%) for 6 months and 37 of the 75 patients admitted to the hospital with acute COVID-19 had long COVID for 9 months (49%). The most common long COVID symptoms were fatigue and breathlessness.

Conclusion: Nearly two-thirds of patients at 3 months and a half at 9 months had long COVID. COVID-19 pneumonia was the strongest predictor of long COVID in Caucasians at 3 months.

Source: Nune A, Durkowski V, Titman A, Gupta L, Hadzhiivanov M, Ahmed A, Musat C, Sapkota HR. Incidence and risk factors of long COVID in the UK: a single-centre observational study. J R Coll Physicians Edinb. 2021 Dec;51(4):338-343. doi: 10.4997/JRCPE.2021.405. PMID: 34882130. https://pubmed.ncbi.nlm.nih.gov/34882130/

A model framework for projecting the prevalence and impact of Long-COVID in the UK

Abstract:

The objective of this paper is to model lost Quality Adjusted Life Years (QALYs) from symptoms arising from COVID-19 disease in the UK population, including symptoms of ‘long-COVID’. The scope includes QALYs lost to symptoms, but not deaths, due to acute COVID-19 and long-COVID. The prevalence of symptomatic COVID-19, encompassing acute symptoms and long-COVID symptoms, was modelled using a decay function. Permanent injury as a result of COVID-19 infection, was modelled as a fixed prevalence. Both parts were combined to calculate QALY loss due to COVID-19 symptoms. Assuming a 60% final attack rate for SARS-CoV-2 infection in the population, we modelled 299,730 QALYs lost within 1 year of infection (90% due to symptomatic COVID-19 and 10% permanent injury) and 557,764 QALYs lost within 10 years of infection (49% due to symptomatic COVID-19 and 51% due to permanent injury). The UK Government willingness-to-pay to avoid these QALY losses would be £17.9 billion and £32.2 billion, respectively.

Additionally, 90,143 people were subject to permanent injury from COVID-19 (0.14% of the population). Given the ongoing development in information in this area, we present a model framework for calculating the health economic impacts of symptoms following SARS-CoV-2 infection. This model framework can aid in quantifying the adverse health impact of COVID-19, long-COVID and permanent injury following COVID-19 in society and assist the proactive management of risk posed to health. Further research is needed using standardised measures of patient reported outcomes relevant to long-COVID and applied at a population level.

Source: Martin C, Luteijn M, Letton W, Robertson J, McDonald S. A model framework for projecting the prevalence and impact of Long-COVID in the UK. PLoS One. 2021 Dec 2;16(12):e0260843. doi: 10.1371/journal.pone.0260843. PMID: 34855874; PMCID: PMC8639065. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8639065/ (Full text)

Survey of people with Myalgic Encephalomyelitis (ME) to explore their use and experiences of physiotherapy services in the UK

Abstract:

250,000 people live with Myalgic Encephalitis (ME) in the UK, this compares to 100,000 living with Multiple Sclerosis. In 2019, a survey by MEAction of 1906 people with ME, identified that over 50% of people who attended specialists ME clinics, employing physiotherapists, were unsatisfied with the services. People with ME (PwME) are also seen in regular musculoskeletal, community, neurological and paediatric physiotherapy services but the views of PwME related to these services are not known. The aim of this present survey, therefore, was to identify the experiences of PwME of physiotherapy services throughout all areas of physiotherapy practice.

Source: Clague-Baker N, Bull, M, Lesile K, Hilliard N. Survey of people with Myalgic Encephalomyelitis (ME) to explore their use and experiences of physiotherapy services in the UK. Physiotherapy, P076, VOLUME 113, SUPPLEMENT 1, E101-E102, DECEMBER 01, 2021. https://www.physiotherapyjournal.com/article/S0031-9406(21)00164-4/fulltext