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

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.

ELAROS is pleased to announce that University of Sydney are ELAROS’ first international client outside of the United Kingdom to adopt our digital C19-YRS platform as part of a research study on Long Covid.

The study will run for 12 months initially, starting in June 2023.

We expect to share more progress made across Australia to support additional research studies and clinics with our platform.

If you represent a clinical or research team and are interested in the C19-YRS, please contact c19-yrs@elaros.com

ELAROS is delighted to announced that we, alongside our partner, the University of Leeds, have secured funding from the Economic and Social Research Council (ESRC) to establish a research fellowship at the University focus on: “Enhancing the consumer uptake and impact of the world’s first long COVID digital platform developed by University of Leeds and ELAROS“

ELAROS’ Director of Research & Development, Román Rocha Lawrence, will be seconded into the University of Leeds for 6 months to explore the usability limitations and barriers to uptake of ELAROS’ C19-YRS platform and access to long Covid services more widely within the NHS across different population groups, to consider how to refine the delivery of specialist services to long Covid sufferers at home and in clinic.

Román will join the ‘BMJ Award’ winning team led by our colleague and long-term collaborator, Dr Manoj Sivan, at the Leeds Institute of Rheumatic and Musculoskeletal Medicine (LIRMM).