Post‐COVID syndrome symptoms, functional disability, and clinical severity phenotypes in hospitalized and nonhospitalized individuals: A cross‐sectional evaluation from a community COVID rehabilitation service

Sivan, Manoj; Parkin, Amy; Makower, Sophie; Greenwood, Darren C.

doi:10.1002/jmv.27456

Cited by 82 publications

(106 citation statements)

References 21 publications

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“…7-9 The content was decided using a consensus method and the scale was kept balanced in terms of questions spanning all aspects of the 2001 WHO International Classification of Functioning, Disability and Health (ICF) framework. 10 The content validity of the scale was supported by studies 11, 12 using the scale which revealed symptoms and functional problems similar to other LC studies in the literature. 13, 14…”

Section: Introductionsupporting

confidence: 59%

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID syndrome

Sivan

Preston

Parkin

et al. 2022

Preprint

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Background: The C19-YRS was the first validated scale reported in the literature for patient assessment and monitoring in Long Covid or Post-COVID syndrome. The 22-item scale contains four subscales measuring symptom severity, functional disability, overall health and additional symptoms. Objectives: This study aimed to modify and refine the scale based on psychometric properties, emerging evidence on additional Long Covid symptoms, and feedback from a working group of patients and healthcare professionals. Methods: Data were collected from 370 patients who completed the C19-YRS scale in a community Long COVID service. The psychometric properties of the Symptom Severity and Functional Disability subscales were assessed using a Rasch Measurement Theory framework, where all individual scale items were assessed for model fit, local dependency, response category functioning and differential item functioning (DIF) by age group and sex. Additionally, the subscales were assessed for targeting, reliability and unidimensionality. The overall health subscale is a single item, and the additional symptoms subscale is not intended to be summed, therefore neither is appropriate for Rasch analyses. Psychometric results and implications were relayed back to the working group for discussion, alongside clinical evidence of emerging and relevant symptoms not covered by the original C19-YRS. Results: Rasch analysis revealed promising psychometric properties of the symptom severity and functional disability subscales, with both displaying good targeting and reliability, although some individual measurement anomalies were noted. The original 0-10 item response category structure did not operate as intended for both the subscales. Post-hoc rescoring suggested that a 4-point response category structure would be more appropriate for both the subscales, and this aligned with patient feedback. This scoring change was implemented, alongside changes in the item composition of the symptom severity and additional symptoms subscales. The functional disability item set, and the overall health single-item subscale remained unchanged. Conclusion: A modified version of the C19-YRS was developed based on a combination of psychometric evidence, clinical relevance of the content and feedback from the working group (comprising patients and healthcare professionals). Future studies including NIHR funded LOCOMOTION study will undertake large-scale, multi-centre validation of the modified C19-YRS.

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Section: Introductionsupporting

confidence: 59%

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID syndrome

Sivan

Preston

Parkin

et al. 2022

Preprint

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“…Preliminary validation data from the COVID-19 Yorkshire Rehabilitation Scale, a condition-specific outcome measure for long COVID, 49 suggest that patients scoring low on one symptom tend to score low on other symptoms too (see figure 2 ) 12 —consistent with severity phenotypes seen in the posthospitalisation COVID-19 study, 10 and suggesting that long COVID may be driven by common mechanisms affecting multiple body systems. Workstream ‘Use the COVID-19 Yorkshire Rehabilitation Scale to monitor symptoms in clinic cohorts’ will test this hypothesis to determine the extent to which the COVID-19 Yorkshire Rehabilitation Scale can be used for triage, targeting interventions and capturing the response to treatments.…”

Section: Methods and Analysismentioning

confidence: 75%

“…A qualitative substudy will seek to understand and address the multiple intersecting inequalities in long COVID service utilisation. 12 Working with and through participating NHS organisations, as well as community and advocacy organisations and selected social media outlets, we will recruit a maximum-variety sample of 30 people with long COVID representing key characteristics of underserved groups who have not (yet) been seen in a long COVID clinic. Sampling criteria include: poverty, homelessness, non-white ethnic groups (including traveller communities) and those with disabilities; within all these groups, we will seek to include a gender balance and recruit diverse age groups.…”

Section: Methods and Analysismentioning

confidence: 99%

“…Initial testing of a previous version of the COVID-19 Yorkshire Rehabilitation Scale in 370 community patients from a single long COVID clinic (Leeds) appears to reveal three clinical severity phenotypes (mild, moderate and severe) for both individual symptom clusters and functional disability ( figure 2 ). 12 Such condition severity phenotypes with remitting relapsing nature of the condition suggest common mechanisms driving the array of symptoms but this is yet to be fully established.…”

Section: Methods and Analysismentioning

confidence: 99%

“…Figure reproduced with permission from Sivan et al . 12 ADL, Activities of Daily Living; PTSD, post-traumatic stress disorder.…”

Section: Methods and Analysismentioning

confidence: 99%

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

et al. 2022

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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,NCT15022307.

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Understanding How Post–COVID-19 Condition Affects Adults and Health Care Systems

et al. 2023

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ImportancePost–COVID-19 condition (PCC), also known as long COVID, encompasses the range of symptoms and sequelae that affect many people with prior SARS-CoV-2 infection. Understanding the functional, health, and economic effects of PCC is important in determining how health care systems may optimally deliver care to individuals with PCC.ObservationsA rapid review of the literature showed that PCC and the effects of hospitalization for severe and critical illness may limit a person’s ability to perform day-to-day activities and employment, increase their risk of incident health conditions and use of primary and short-term health care services, and have a negative association with household financial stability. Care pathways that integrate primary care, rehabilitation services, and specialized assessment clinics are being developed to support the health care needs of people with PCC. However, comparative studies to determine optimal care models based on their effectiveness and costs remain limited. The effects of PCC are likely to have large-scale associations with health systems and economies and will require substantial investment in research, clinical care, and health policy to mitigate these effects.Conclusions and RelevanceAn accurate understanding of additional health care and economic needs at the individual and health system levels is critical to informing health care resource and policy planning, including identification of optimal care pathways to support people affected by PCC.

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Post‐COVID syndrome symptoms, functional disability, and clinical severity phenotypes in hospitalized and nonhospitalized individuals: A cross‐sectional evaluation from a community COVID rehabilitation service

Cited by 82 publications

References 21 publications

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID syndrome

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID syndrome

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

Understanding How Post–COVID-19 Condition Affects Adults and Health Care Systems

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