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The C19-YRS is the literature's first condition-specific, validated scale for patient assessment and monitoring in Post-COVID-19 syndrome (PCS). The 22-item scale's subscales (scores) are symptom severity (0-100), functional disability (0-50), additional symptoms (0-60), and overall health (0-10).This study aimed to test the scale's psychometric properties using Rasch analysis and modify the scale based on analysis findings, emerging information on essential PCS symptoms, and feedback from a working group of patients and professionals.Data from 370 PCS patients were assessed using a Rasch Measurement Theory framework to test model fit, local dependency, response category functioning, differential item functioning, targeting, reliability, and unidimensionality. The working group undertook iterative changes to the scale based on the psychometric results and including essential symptoms.Symptom severity and functional disability subscales showed good targeting and reliability. Post hoc rescoring suggested that a 4-point response category structure would be more appropriate than an 11-point response for both subscales. Symptoms with binary responses were placed in the other symptoms subscale. The overall health single-item subscale remained unchanged.A 17-item C19-YRSm was developed with subscales (scores): symptom severity (0-30), functional disability (0-15), other symptoms (0-25), and overall health (0-10).

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.

BackgroundThe 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.ObjectivesThis 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.MethodsData 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.ResultsRasch 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.ConclusionA 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.

BackgroundAs our understanding of the nature and prevalence of Post-COVID-19 syndrome (PCS) is increasing, a measure of the impact of COVID-19 could provide valuable insights into patients’ perceptions in clinical trials and epidemiological studies, as well as routine clinical practice.ObjectiveTo evaluate the clinical usefulness and psychometric properties of the COVID-19 Yorkshire Rehabilitation Scale (C19-YRS) in patients with PCS.DesignA prospective, observational study of 187 consecutive patients attending a post-COVID-19 rehabilitation clinic. The C19-YRS was used to record patients’ symptoms, functioning and disability. A global health question was used to measure the overall impact of PCS on health. Classical psychometric methods (data quality, scaling assumptions, targeting, reliability and validity) were used to assess the C19-YRS.ResultsFor the overall scale, missing data were low, scaling and targeting assumptions were satisfied, and internal consistency was high (Cronbach’s alpha = 0.891). Relationships between perception of health and patients’ reports of symptoms, functioning and disability demonstrated good concordance.ConclusionsThis is the first study to examine the psychometric properties of an outcome measure in patients with PCS. In this sample of patients, the C19-YRS was clinically useful and satisfied standard psychometric criteria, providing preliminary evidence of its suitability as a measure of PCS.

Since the first wave of COVID-19 in March 2020 the number of people living with post-COVID syndrome has risen rapidly at global pace, however, questions still remain as to whether there is a hidden cohort of sufferers not accessing mainstream clinics. This group are likely to be constituted by already marginalised people at the sharp end of existing health inequalities and not accessing formal clinics. The challenge of supporting such patients includes the question of how best to organise and facilitate different forms of support. As such, we aim to examine whether peer support is a potential option for hidden or hardly reached populations of long COVID sufferers with a specific focus on the UK, though not exclusively. Through a systematic hermeneutic literature review of peer support in other conditions (57 papers), we evaluate the global potential of peer support for the ongoing needs of people living with long COVID. Through our analysis, we highlight three key peer support perspectives in healthcare reflecting particular theoretical perspectives, goals, and understandings of what is ‘good health’, we call these: biomedical (disease control/management), relational (intersubjective mutual support) and socio-political (advocacy, campaigning & social context). Additionally, we identify three broad models for delivering peer support: service-led, community-based and social media. Attention to power relations, social and cultural capital, and a co-design approach are key when developing peer support services for disadvantaged and underserved groups. Models from other long-term conditions suggest that peer support for long COVID can and should go beyond biomedical goals and harness the power of relational support and collective advocacy. This may be particularly important when seeking to reduce health inequalities and improve access for a potentially hidden cohort of sufferers.

Background There is currently limited information on clinical severity phenotypes of symptoms and functional disability in Post-COVID Syndrome (PCS) METHODS: A purposive sample of 370 PCS patients from a dedicated community COVID-19 rehabilitation service were assessed using the C19-YRS (COVID-19 Yorkshire Rehabilitation Scale) where each symptom or functional difficulty was scored on a 0-10 Likert scale and also compared with before infection. Phenotypes based on symptom severity were extracted to identify any noticeable patterns. Correlation between symptom severity, functional disability and overall health was explored. Results Mean age was 47 years, with 237 (64%) female. Median duration of symptoms was 211 days (interquartile range 143 to 353). Symptoms and functional difficulties increased substantially when compared to before infection. Three distinct severity phenotypes of mild (n=90), moderate (n=186) and severe (n=94) were identified where severity of individual symptoms was of similar severity within each phenotype. Symptom scores were strongly positively correlated with functional difficulty scores (0.7, 0.6 to 0.7) and moderately negatively correlated with overall health (-0.4, -0.3 to -0.5). Conclusions This is the first study reporting on severity phenotypes in a largely non-hospitalised PCS cohort. Severity phenotypes might help stratify patients for targeted interventions and planning of care pathways. Word count: 199 This article is protected by copyright. All rights reserved.

The C19-YRS was the first scale reported in the literature for patient assessment and monitoring in Long Covid or Post-COVID syndrome. The scale has demonstrated content validity in a previous COVID-19 follow-up study. The growing number of patients with Post-COVID syndrome required the development of a self-report version (and a digital format) so that the scale can be completed by patients themselves. Individuals with Long Covid and clinicians providing care were involved in iterative changes to the scale. The self-report version of the scale captures symptom severity, functional disability and global health status. The C19-YRS digital format comprises a smartphone application for the patient and a web portal for the clinician to assess, triage and monitor patients remotely. The items have been shown to span all the components of the WHO ICF Framework for health condition.

The National Institute for Health and Care Excellence (NICE) describe “ post COVID-19 syndrome” or “Long COVID” as a set of persistent physical, cognitive and/or psychological symptoms that continue for more than 12 weeks after illness and which are not explained by an alternative diagnosis. These symptoms are experienced not only by patients discharged from hospital but also those in the community who did not require inpatient care. To support the recovery of this group of people, a unique integrated rehabilitation pathway was developed following extensive service evaluations by Leeds Primary Care Services, Leeds Community Healthcare NHS Trust and Leeds Teaching Hospital NHS Trust. The pathway aligns itself to the NHS England “Five-point plan” to embed post-COVID-19 syndrome assessment clinics across England, supporting the comprehensive medical assessment and rehabilitation intervention for patients in the community. The pathway was first of its kind to be set up in the UK and comprises of a three-tier service model (level 1: specialist MDT service, level 2: community therapy teams and level 3: self-management). The MDT service brings together various disciplines with specialist skill sets to provide targeted individualized interventions using a specific core set of outcome measures including C19-YRS (Yorkshire Rehabilitation Scale). Community and primary care teams worldwide need such an integrated multidisciplinary comprehensive model of care to deal with the growing number of cases of post-COVID-19 syndrome effectively and in a timely manner.