Published on the 26th of March 2024 doi: 10.3390/jcm13071908

‘Long COVID Clinical Severity Types Based on Symptoms and Functional Disability: A Longitudinal Evaluation’

The abstract of the article and summary points can be read here, but for the full article, please follow any of the links above.

Abstract: 

Authors: 

• Manoj Sivan
• Adam B Smith
• Thomas Osborne
• Madeline Goodwin
• Román Rocha Lawrence
• Sareeta Baley
• Paul Williams
• Cassie Lee
• Helen Davies
• Kumuran Balasundaram
• Darren C. Greenwood

on behalf of the LOCOMOTION Consortium

Article published on the 19th of January 2024 by the University of Leeds on the future of digital PROMs. 

‘Long COVID reported app helps overcome socio-economic barriers’

A summary of the article and summary points can be read here, but for the full article, please follow the link above.

Summary: 

Impact Acceleration Account (IAA) funding gave Dr Manoj Sivan the opportunity to overcome socio-economic barriers between medicine and social sciences. He employed a research fellow (Román Rocha Lawrence – ELAROS Director of Research and Development) to help develop a knowledge-sharing app for patients managing Long Covid symptoms at home. 

Dr Manoj Sivan made it clear that ‘Long Covid is a public health problem, and our digital platform means we can reach people in the community outside of a clinical environment. Interdisciplinary work with LSSI, therefore, is vital, as we can step beyond a medical setting to deliver resources and care for people in their homes’ 

The article went on to say that IAA funding was able to provide the knowledge exchange element, which made developing the digital app for public use a truly collaborative effort.

Published on the 3rd of January 2024 doi: 10.1101/2023.12.22.23300424

‘Psychometric analysis of the modified Covid-19 Yorkshire Rehabilitation Scale (C19-YRSm) in a prospective multicentre study’

The abstract of the article and summary points can be read here, but for the full article, please follow any of the links above.

Abstract: 

Background: Long COVID is a novel multisystem clinical syndrome affecting millions of individuals worldwide. The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) is a condition-specific patient-reported outcome measure designed for assessment and monitoring of people with Long COVID (LC).

Objectives: To evaluate the psychometric properties of the C19-YRSm in a prospective sample of people with Long COVID.

Methods 1314 patients attending UK specialist Long COVID clinics completed C19-YRSm and EQ-5D-5L longitudinally. Scale characteristics were derived for C19-YRSm subscales (Symptom Severity, SS; Functional Disability, FD; and Overall Health, OH) and internal consistency (Cronbach’s alpha). Convergent validity was assessed using the FACIT-Fatigue scale. Known groups validity was assessed for the Other Symptoms (OS) subscale as tertiles, hospitalisation and intensive care admission. Responsiveness and test-retest reliability was evaluated for C19-YRSm subscales and EQ-5D-5L. The minimal important difference (MID) and minimal clinically important difference (MCID) were estimated. Confirmatory factor analysis was applied to determine the instrument’s two-factor structure.

Results: C19-YRSm demonstrated good scale characteristic properties. Item-total correlations were between 0.37 to 0.65 (for SS and FD), with good internal reliability (Cronbach’s alphas >0.8). Item correlations between subscales ranged between 0.46 to 0.72. Convergent validity with FACIT was good (−0.46 to −0.62). The three subscales discriminated between different levels of symptom burden (p<0.001), and between patients admitted to hospital and intensive care. There was moderate responsiveness for the three subscales ranging from 0.22 (OH) to 0.50 (SS) and was greater than the EQ-5D-5L. Test-retest reliability was good for both SS 0.86 and FD 0.78. MID was 2 for SS, 2 for FD, and 1 for OH; MCID was 4 for both the SS and FD. The factor analysis supported the two-factor SS and FD structure.

Conclusions: The C19-YRSm is a condition-specific, reliable, valid, and responsive patient-reported outcome measure for Long COVID.

What is already known on this topic: Long Covid or Post-COVID-19 syndrome is a multisystem, fluctuating condition. C19-YRSm is literature’s first condition-specific patient reported outcome measure which needed validation in a large population sample.

What this study adds: C19-YRSm is a valid, reliable, responsive and easy to administer measure which is able to show clinically meaningful change in the status of the condition in people living with Long Covid.

How this study might affect research, practice or policy: C19-YRSm can be used in clinical and research settings to reliably capture the condition trajectory and the effect of interventions and also help inform clinical policy.

Authors: 

• Adam B. Smith
• Darren C. Greenwood
• Mike Horton
• Thomas Osbourne
• Madeline Goodwin
• Román Rocha Lawrence
• Darren Wince
• Ruadiridh Milne 
• LOCOMOTION Consortium
• Manoj Sivan

Published on the  26th of December 2023 in the European Journal of Health Economics, doi:10.1007/s10198-023-01653-z

‘Impact of Long COVID on productivity and informal caregiving’

The abstract of the article and summary points can be read here, but for the full article, please follow any of the links above.

Abstract: 

Background: Around 2 million people in the UK suffer from Long COVID (LC). Of concern is the disease impact on productivity and informal care burden. This study aimed to quantify and value productivity losses and informal care receipt in a sample of LC patients in the UK.

Methods: The target population comprised LC patients referred to LC specialist clinics. The questionnaires included a health economics questionnaire (HEQ) measuring productivity impacts, informal care receipt and service utilisation, EQ-5D-5L, C19-YRS LC condition-specific measure, and sociodemographic and COVID-19 history variables. Outcomes were changes from the incident infection resulting in LC to the month preceding the survey in paid work status/h, work income, work performance and informal care receipt. The human capital approach valued productivity losses; the proxy goods method valued caregiving hours. The values were extrapolated nationally using published prevalence data. Multilevel regressions, nested by region, estimated associations between the outcomes and patient characteristics.

Results: 366 patients responded to HEQ (mean LC duration 449.9 days). 51.7% reduced paid work hours relative to the pre-infection period. Mean monthly work income declined by 24.5%. The average aggregate value of productivity loss since incident infection was £10,929 (95% bootstrap confidence interval £8,844-£13,014) and £5.7 billion (£3.8-£7.6 billion) extrapolated nationally. The corresponding values for informal caregiving were £8,726 (£6,247-£11,204) and £4.8 billion (£2.6-£7.0 billion). Multivariate analyses found significant associations between each outcome and health utility and C19-YRS subscale scores.

Conclusion: LC significantly impacts productivity losses and provision of informal care, exacerbated by high national prevalence of LC.

Authors: 

• Joseph Kwon
• Ruairidh Milne
• Clare Rayner
• Román Rocha Lawrence
• Jordan Mullard
• Ghazala Mir
• Brendan Delaney
• Manoj Sivan
• Stavros Petrou

Article published on the 20th of October 2023 by the Journal of Medical Internet Research, doi.org/10.2196/48632

‘Digital Patient Reported Outcome Measures Platform for Post-COVID-19 Condition and Other Long-Term Conditions: User-Centered Development and Technical Description’

The abstract of the article and summary points can be read here, but for the full article, please follow the link above.

Abstract: 

Background: Post-COVID-19 condition (PCC), colloquially known as long COVID, is a multisystem condition characterized by persistent symptoms beyond 4 weeks after the SARS-CoV-2 infection. More than 60 million people with PCC worldwide need prompt assessment, diagnosis, and monitoring, with many requiring specialist help from a multidisciplinary team of health care professionals (HCPs). Consequently, a scalable digital system is required for both people with PCC and HCPs to capture the breadth of symptoms and their impact on health, using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs).

Objective: We aim to develop and implement a novel PCC digital PROM (DPROM) platform for (1) securely collecting PROM and PREM data from people with PCC, (2) enabling users to monitor symptoms longitudinally and assess response to treatment, (3) generating reports for the electronic health records (EHRs), (4) providing summary reports on PCC services based on national requirements, and (5) facilitating the sharing of relevant data with authorized research teams to accelerate our understanding of this new condition and evaluate new strategies to manage PCC.

Methods: We (1) undertook requirement analysis with people with PCC, HCPs, and researchers to identify the needs of the DPROM platform and determine its required functionalities; (2) designed and developed a clinically useful web portal for staff and a mobile app for patients, with a web-based alternative app to improve patient and staff choice, limit the risk of digital exclusion, and account for variability across services; (3) determined the PROMs and PREMs that PCC services would prefer to use on the platform; and (4) designed the summary report function that can be generated for each user for the EHR and for reporting to national health authorities.

Results: A DPROM platform to record PCC symptom profile, condition severity, functional disability, and quality of life, based on the C19-YRS (Yorkshire Rehabilitation Scale) and other PROMs and PREMs, was developed. Individual-level medical information and details on the COVID-19 illness can be captured systematically. The platform generates easy-to-understand scores, radar plots and line graphs for people with PCC to self-monitor their condition and for HCPs to assess the natural course of the condition and the response to interventions. Clinics can configure a suite of PROMs and PREMs based on their local and national service and commissioning requirements and support research studies which require large-scale data collection on PROMs. The DPROM platform enables automatic aggregate data analysis for services to undertake service evaluation and cost-effectiveness analysis. The DPROM platform generated summary report can be uploaded to the EHRs of people with PCC.

Conclusions: A multifunctional DPROM platform to assess, grade, and monitor PCC has been developed. Future research will analyze the system’s usability in specialist PCC clinical services and other long-term conditions.

Authors: 

Dr Manoj Sivan

Román Rocha Lawrence

Prof Paul O’Brien

Published on the 3rd of October in the International Journal of Medicine, doi: 10.1093/qjmed/hcad224

‘Psychometric properties and observational data for COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) for Post-COVID-19 Syndrome’

The abstract of the article and summary points can be read here, but for the full article, please follow the link above.

Abstract: 

Background: The recently developed modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) captures comprehensive biopsychosocial components of WHO’s International Classification of Functioning, Disability, and Health related to the Long Covid or post-COVID syndrome. The scale response categories on C19-YRSm were done post hoc on data collected from the original version of C19-YRS.

Objectives: The study aims to evaluate the C19-YRSm scale using reliability and validity measures.

Methods: This prospective, observational study includes 369 patients (clinical group) and 426 subjects of the general population (control group) and captures their post-COVID-19 symptoms. In addition, the reliability of C19-YRSm was estimated by Cronbach’s alpha coefficients of internal consistency and inter-item correlations for subscales (Symptom severity, Functional disability, and Other symptoms). Convergent validity was established using correlations between C19-YRSm and Fatigue Severity Scale (FSS). The incremental validity of C19-YRSm was measured by introducing a hierarchical regression model using the C19-YRSm Overall health subscale and FSS as criterion variables.

Results: C19-YRSm subscales have excellent internal consistencies (Cronbach’s α value .81 to .96) and acceptable inter-item correlations (r value 0.23 to 0.79). Hereafter, the convergent validity of the C19-YRSm is good due to significant correlations between C19-YRSm subscales and FSS and C19-YRSm subscales. Finally, the hierarchical regression analysis supported consistent evidence for the incremental validity of the C19-YRSm subscales.

Conclusion: C19-YRSm is a reliable and valid self-assessment scale for the assessment of post-COVID-19 syndrome.

Authors: 

• Lea Kustura
• Dubravka Bobek
• Ana Poljičanin
• Sanda Pavelin
• Maja Buljubašić Šoda
• Joško Šoda
• Jan Aksentijević
• Klaudia Duka Glavor
• Nikolina Narančić Knez
• Vanja Viali
• Antonio Cukrov
• Ivana Todorić Laidlaw
• Nina Ipavec
• Dora Vukorepa
• Ivona Stipica
• Karla Bakrač
• Braco Bošković
• Angela Mastelić
• Nikolina Režić Mužinić
• Anita Markotić
• Zoran Đogaš
• Krešimir Dolić
• Maja Rogić Vidaković

Published on the 8th of August in the Open Journal of Preventative Medicine, doi: 10.4236/ojpm.2022.128012 

‘Assessment of Persistence Symptoms in Recovered COVID-19 Patients by Yorkshire Rehabilitation Scale          (C19-YRS): A Cross-Sectional Study from Qassim Region, Saudi Arabia’

The abstract of the article and summary points can be read here, but for the full article, please follow the link above.

Abstract: 

Background: Earlier back at the beginning of COVID-19, the acute phase of infection was variable from one patient to another causing different symptoms. However, many patients are still suffering from Post COVID-19 Syndrome. Hence, this study aimed to assess the persistence of symptoms in patients who recovered from COVID-19 in the Qassim Region, Saudi Arabia.

Methodology: A descriptive cross-sectional study of 413 confirmed PCR test-positive covid-19 patients enrolled in this study from the Ministry of Health Electronic Surveillance System (HESN). The Yorkshire Rehabilitation Scale (C19-YRS) checklist was used to record patients’ symptoms, functioning, and disability. Data were analyzed by the SPSS program. Functional and patient-reported outcome measures were correlated with certain items from C19-YRS, the severity of symptoms. Its distribution-based methods were used for responsiveness over time. The scaling and targeting assumptions were satisfied, and internal consistency was high (Cronbach’s α = 0.843).

Results: After 4 weeks of infection, 50% of patients reported persistent symptoms such as laryngeal complications, 43.8% Swallowing changes, 31.3% fatigue, 18.8% pain, 18.8% loss of appetite, 12.5% breathlessness, and 6.3% depression, Moreover, 18.8% of patients experienced reduced mobility. At the beginning of the COVID-19 infection, fever was the most common complaint 332 (80.4%), followed by 267 (64.6%) fatigue, and loss of smell 230 (55.7%). The severity of the breathlessness symptoms was exaggerated during the patients’ walking or climbing stairs. Patients who were admitted to an intensive care unit (n = 5) were significantly elderly (P < 0.001), with chronic diseases (P < 0.01) mainly Diabetes Mellitus and Hypertension.

Conclusion: The study examined the severity of post covid syndrome by patients’ responsiveness to the scale items in C19-YRS. The majority of COVID-19 symptoms were still present but significantly reduced after 4 weeks of infection. Follow-up and long-term management of physical and psychological symptoms of hospitalized and non-hospitalized patients are very important.

Authors: 

• Mnahal Ali Al Hsaon
• Amel Abdalrahim Sulaiman
• Family Medicine Academy
• Qassim Health Cluster
• Buraydah
• Kingdom of Saudi Arabia

Published on the 10th of August 2023 in the British Medical Journal doi:  10.1136/bmj.p1816

‘Digital interactive patient reported outcome measures for long term
conditions’

The authors of the article include 

Dr Manoj Sivan (Associate Clinical Professor and Honorary Consultant at Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds Teaching Hospitals NHS Trust and Leeds Community Healthcare NHS Long Covid service), 

Román Rocha  Lawrence (Research Fellow at Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds and Director of Research and Development at ELAROS 24/7 Limited)

Emily Francis (patient author). 

A snippet of the article can be read here, but for the full article, please follow the link above.

There are more than 15 million people with a long term condition in England alone. Healthcare providers around the globe are facing the challenge of providing high quality services for these individuals and constantly evaluating whether these services are effective and offer value for money. There is a need to make the evaluation easier, in real time, and interactive between individuals, clinicians, and care providers. Digital Patient Reported Outcome Measures (PROMs) enable individuals’ outcomes to be captured on their smart devices, relaying the information to their clinicians, and linking the outcomes directly to the healthcare records. In our view, there is a need to adopt this approach within all services for long term conditions.

Published on the 11th of April 2023 in the BMC Public Health Journal doi.org/10.1186/s12889-023-15566-2

‘The Thai version of the COVID-19 Yorkshire Rehabilitation Scale: a valid instrument for the psychometric assessment of the community members in Bangkok, Thailand’

The abstract of the article and summary points can be read here, but for the full article, please follow the link above.

Abstract: 

Background

Coronavirus disease 2019 (COVID-19) can develop into a long-term COVID in some cases, which can have a major impact on various health systems requiring appropriate treatment involving multi-disciplinary healthcare. The COVID-19 Yorkshire Rehabilitation Scale (C19-YRS) is a standardized tool widely used for screening the symptoms and severity of long-term COVID. Translation of the English version of the C19-YRS into the Thai language and testing it is essential for the psychometric evaluation of the severity of the long-term COVID syndrome prior to providing rehabilitation care for community members.

Methods

Forward-and back-translations including cross-cultural aspects were conducted in order to develop a preliminary Thai version of that tool. Five experts evaluated the content validity of the tool and produced a highly valid index. A cross-sectional study was then conducted on a sample of 337 Thai community members recovering from COVID-19. Assessment of internal consistency and individual item analyses were also performed.

Results

The content validity resulted in valid indices. The analyses showed that 14 items had acceptable internal consistency, based on the corrected item correlations. However, five symptom severity items and two functional ability items were deleted. The Cronbach’s alpha coefficient of the final C19-YRS was 0.723, indicating acceptable internal consistency and reliability of the survey instrument.

Conclusions

This study indicated that the Thai C19-YRS tool had acceptable validity and reliability for the evaluation and testing of the psychometric variables in a Thai community population. The survey instrument also had acceptable validity and reliability for screening the symptoms and severity of long-term COVID. Further studies are warranted in order to standardize the various applications of this tool.

Authors: 

• Suphamas Partiprajak, 
• Suphanna Krongthaeo, 
• Noppawan Piaseu, 
• Jatuporn Wongsathikun
• Anon Kongsuwan