Early experiences of the Your COVID Recovery® digital programme for individuals with long COVID

Abstract

Objectives

To describe the early data from the Your COVID Recovery^® digital programme and to explore the data collected from two embedded outcome measures.

Design

Observational.

Setting

Primary and secondary care (England—Online).

Participants

110 individuals completed the programme (68.1% female, 88.1% White British, age: 46.3 (10.8) years, weight: 86.5 (21.1) kg, height: 169.3 (10.0) cm). 47.2% of patients reported comorbidities.

Intervention

Following an assessment by a healthcare professional, individuals with long COVID were offered access to the Your COVID Recovery^® digital programme. The programme comprises of four stages for the participants to progress through. Participants are encouraged to record severity of their symptoms and amount of activity they are doing on a symptom and an activity tracker. Resources and interactive material on managing symptoms of long COVID are available throughout each stage.

Primary outcome measures

Questionnaire (EuroQ0l 5-Dimension 5-Level (EQ-5D-5L) and the chronic obstructive pulmonary disease assessment test (CAT)) data were extracted from the site from 11 March 2021 until 9 November 2021.

Results

Participants were on the programme for 8.6 (4.3) weeks. There was a statistically significant increase in EQ-5D-5L visual analogue scale (VAS) score (pre=48.8 (19.5); post=59.9 (22.1); p<0.01). The EQ-5D-5L Index Value preintervention to postintervention did improve but not significantly (pre=0.5 (0.3); post=0.6 (0.3); p=0.09). CAT total score improved significantly preintervention to postintervention (pre=19.8 (7.2); post=15.6 (7.6); p<0.01). All CAT item scores significantly improved preintervention to postintervention (p<0.005), except the phlegm item score (p=0.168).

Discussion

This early data describes the impact of the Your COVID Recovery^® digital programme on the first cohort of patients to complete the digital recovery programme. The outcome data are promising and should encourage uptake.

Correspondence to Professor Sally J Singh; [email protected]

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Objective measures in large cohorts have demonstrated that symptom burden persists in a large number of individuals post-infection with SARS-CoV-2 (COVID-19). Recommendations for rehabilitation are emerging, and little data exist on effective rehabilitation packages.

WHAT THIS STUDY ADDS

• These early data describe the impact of the Your COVID Recovery^® digital programme on the first cohort of patients to complete the programme.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• The early data are encouraging and should be further evaluated as part of a randomised controlled trial.

Introduction

There is a wealth of evidence that indicates there is a significant symptom burden for a high proportion of patients after an initial acute infection with SARS-CoV-2 (COVID-19).^{1 2} Symptoms that persist for 4–12 weeks are termed ‘long COVID.’³ Recent data suggest that around 2 million people are living with long COVID in the UK.⁴ The symptoms associated with long COVID can have a significant impact on the individual’s overall well-being.^{1 2} Commonly reported symptoms include fatigue, breathlessness, cough, musculoskeletal pain and changes to taste and smell.³ Although recommendations for rehabilitation are emerging,⁵ models and evidence for rehabilitation are lacking. Given the likely demand for rehabilitation services and the challenges of national lockdowns, it was proposed that a digital platform may be worthy of consideration. NHS England supported the development of a site to be made freely available to long COVID services across the country.

Your COVID Recovery^® is an online digital programme for individuals recovering from long COVID. The site has two components: phase one and phase two. Phase one is an open access site (www.yourcovidrecovery.nhs.uk) available worldwide which provides advice on managing common symptoms. Phase two is a password-protected site, accessed following an assessment by a healthcare professional⁶ (figure 1).

Figure 1. A screenshot of the Your COVID Recovery ® digital programme dashboard page.

Site navigation and content was developed in collaboration with individuals who have lived experience of long COVID. The initial content of the site was proposed by individual healthcare professionals, specialists in their field and specialists representing major professional bodies in the UK who have expertise in managing many of the key symptoms associated with long COVID. All content was peer reviewed by additional subject experts, individuals with long COVID (post-admission or managed in the community) and the communications team at NHS England for readability.

The purpose of this project is to describe the early data from the Your COVID Recovery^® digital programme and to explore the data collected from the two outcome measures.

Methods

Participants

Following an assessment by a healthcare professional, individuals with long COVID were offered initial access to the Your COVID Recovery^® digital programme. Participants could be referred from both primary and secondary care sites across England. The site was developed for individuals with persistent long COVID symptoms, displaying ongoing physical and/or psychological symptoms that were impacting their daily activities and their overall quality of life. Individuals were excluded if they demonstrated acute symptoms or required further diagnostic tests to confirm or exclude medical conditions.

Ethical approval

These data have been collected as part of service evaluation; the purpose of service evaluation is to evaluate the effectiveness of the Your COVID Recovery^® digital programme. Moreover, the purpose of processing this information is to observe, analyse and record on a structured online rehabilitation programme for patients diagnosed with COVID or suspected COVID. Patients sign up for the use of the Your COVID Recovery^® digital programme on their own volition, so the lawful basis for conducting the work of either site is consent of the patient. Healthcare providers signed a Digital Protection Agreement which states that only anonymous data will be used for the purpose of service evaluation. Data processing for any service evaluation is anonymous, meaning patients’ confidential information is not shared, and patients will remain anonymous.

Patient and public involvement

Patients were involved throughout the development of Your COVID Recovery^® digital programme and in the choice of outcome measures but not specifically in the data collection.

Intervention

Participants referred on the Your COVID Recovery^® digital programme completed an initial registration stage, followed by an individualised goal setting exercise. The programme is recommended to be supported remotely by the referring healthcare professional with telephone contact advised but not mandated. The site comprises of four stages for the participants to progress through, with a list of tasks to complete each stage. Participants are encouraged to record severity of their symptoms and the amount of activity they are doing on a symptom and an activity tracker on a regular basis. The programme contains interactive and downloadable resources on managing symptoms such as cough, fatigue, fear and anxiety and topics such as eating well, getting moving again and sleeping well. The advice on symptoms is continually available, recognising the fluctuating nature of the disease trajectory.

Patients are able to contact their healthcare professional through the site for support using the ‘ask your healthcare professional’ email function and engage in peer-to-peer support through the site’s forum. It was anticipated that individuals would take approximately 8–12 weeks to complete all four stages of the programme. The site is fully available throughout the patient journey and 12 months post-registration.

Outcome measures

Two measures are embedded into the programme: the EQ-5D-5L^{7 8} and the CAT.⁹ The latter has been tested for its utility in the long COVID population and reflects the major symptoms reported.¹⁰ Basic demographics (eg, age, gender and ethnicity) and questionnaire (EQ-5D-5L and the CAT) data were extracted from the site. Those with complete preintervention and postintervention datasets were extracted from the site from the first patient completing the programme on 11 March 2021 until 9 November 2021.

Statistical analysis

Statistical analysis was performed on SPSS V.28 (SPSS, Chicago, Illinois, USA). Preintervention and postintervention EQ-5D-5L VAS scores, EQ-5D-5L Index Values were compared using the Wilcoxon signed rank test, and the distribution of EQ-5D-5L dimension responses preintervention and postintervention was compared using a χ² test. Preintervention and postintervention CAT total scores were compared using paired t-tests, and the CAT item scores were compared using the Wilcoxon signed rank test. Statistical significance was set at p<0.05. Data are presented as mean (SD) and frequency of participants as n (%).

Results

Characteristics of participants can be found in table 1. 47.2% of patients had comorbidities (respiratory 53.9%, vascular 30.8%, metabolic 50.0%, musculoskeletal 26.9%, cardiac 1.9%, gastrointestinal 26.9% and psychiatric 40.4%). The breakdown of comorbidities is reported in online supplemental appendix 1.

Table 1

Characteristics of 110 participants who completed the Your COVID Recovery^® digital programme

Demographic characteristics	Mean (SD)
Age (years)	46.3 (10.8)
Weight (kg)	86.5 (21.1)
Height (cm)	169.9 (10.0)
Time on programme (weeks)	8.6 (4.3)
	Frequency of participants, n (%)
Gender (female)	75 (68.1)
Ethnicity (White British)	97 (88.1)
Confirmed diagnosis using a PCR test	70 (63.6)
Admitted to hospital for acute management	27 (24.5)

At baseline, the highest scored domains were lack of energy, breathlessness and activity limitation (table 2).

Table 2

Mean (SD) domain responses for all patients at baseline and follow-up for COPD assessment test (CAT)

Domain	Baseline (stage 1)	Follow-up (stage 2)	P value
Cough	1.7 (1.2)	1.2 (1.2)	<0.001
Phlegm	1.1 (1.4)	1.0 (1.3)	0.168
Chest tightness	2.1 (1.5)	1.7 (1.3)	0.002
Breathlessness	3.4 (1.2)	2.4 (1.3)	<0.001
Activity limitation	3.1 (1.5)	2.4 (1.3)	<0.001
Confidence to leave home	2.2 (1.6)	1.8 (1.4)	0.001
Sleep	2.7 (1.5)	2.3 (1.5)	0.006
Energy	3.5 (1.0)	3.0 (1.1)	<0.001

COPD, chronic obstructive pulmonary disease.

EQ-5D-5L VAS scores increased significantly following the Your COVID Recovery^® digital programme (pre=48.8 (19.5); post=59.9 (22.1), p<0.01), with a mean difference of 11.0 (29.3) (95% CI 5.5 to 16.6). The EQ-5D-5L Index Value preintervention to postintervention did improve but not significantly (pre=0.5 (0.3); post=0.6 (0.3); p=0.09), with a mean difference of 0.1 (0.3) (95% CI −0.04 to 0.11).

The proportion of EQ-5D-5L dimension responses at baseline and at follow-up identified a significant improvement in self-care (p<0.001), usual activities (p=0.029) and pain/discomfort (p<0.001) following the Your COVID Recovery^® digital programme (figure 2).

Figure 2. (A-E) Proportion of responses by level of severity for EQ-5D-5L dimensions at baseline and at follow-up (%).

The CAT total scores decreased significantly following the Your COVID Recovery^® digital programme (pre=19.8 (7.2); post=15.6 (7.6), p<0.01) with a mean difference of 4.2 (6.4) (95% CI 3.0 to 5.4). All CAT item scores for symptom burden (breathlessness, cough, chest tightness, activity limitation, confidence to leave home, sleep and energy) improved significantly preintervention to postintervention (p<0.005), apart from the phlegm item score (p=0.168) (table 2).

Discussion

These early data describe the impact of the Your COVID Recovery^® digital programme on the first cohort of patients to complete the programme. The outcome data are promising and should encourage increasing access to the programme. We recognise that these data are observational and a prospective trial with a control group is required to draw definitive conclusions of effectiveness.

Data for the two outcome measures reported (EQ-5D-5L and CAT) reflected that there was an improvement in participants’ perception of their overall health quality of life and are of a similar magnitude to the data reported describing a comprehensive face-to-face COVID rehabilitation programme.¹¹ The minimum clinically important difference (MCID) for these measures is yet to be established for long COVID; however, the changes seen exceed the MCID for chronic obstructive pulmonary disease.^12–14 There has been a randomised controlled trial reported from China⁵ deploying a telehealth model of care which investigated a telerehabilitation programme delivered with a smartphone and heart rate monitoring. The authors reported significant improvements in exercise capacity as their primary outcome, but also reported significant outcomes in health-related quality of life measured with the SF-36 (36-Item Short Form Health Survey). There are also ongoing studies examining digital interventions.¹⁵

Moreover, previous research has reported on the lack of natural recovery for patients with long COVID using the EQ-5D-5L.² Thus, the results are encouraging for such a ‘light-touch digital recovery programme’ and may provide a viable solution for a number of healthcare professionals to deliver a management strategy on a larger scale. The Your COVID Recovery^® digital programme offers free training for staff to help manage a cohort of patients through the digital platform. It is recommended that staff regularly contact participants to support them through the programme and troubleshoot any clinical or technical issues. We do not have data on the level of support provided to participants. The duration on the programme was variable; however, for such a low maintenance programme, this is not such a challenge in terms of capacity management. It is reasonable to expect individuals suffering from a multitude of symptoms that may fluctuate in number and severity, to take longer to work through a programme, particularly if it is largely self-directed compared with the clearly defined duration of either pulmonary or cardiac rehabilitation. One advantage, however, is that individuals have access to the site for up to 12 months post-completion of stage 4 (where the outcome measures are embedded), which is important given the fluctuating nature of symptoms previously reported. However, the data in this study are uncontrolled and a randomised controlled trial of the Your COVID Recovery^® digital platform versus best usual care would be important. Future research should consider this. Nevertheless, the early data should be viewed positively and we would encourage healthcare professionals to consider offering this low maintenance platform to individuals suffering with long COVID.

Conclusion

These early data are encouraging as it demonstrates improvements in symptoms after a COVID infection following a light touch intervention, which can be offered at scale.

We thank everyone who contributed towards the creation of the Your COVID Recovery^® website. This includes Rebecca Barclay, David Murphy, Professor Diane Playford, Sally Hinton, Laura Breach, Dr Tammy Walker, Ruth ten Hove, Dr Steve Holmes, Dr Camilla Dawson, Lauren Walker, Helen Harte who are all part of the Your COVID Recovery^® Development Group. We are also very grateful to the other healthcare professionals, professional bodies, patients and NHS England who helped create and review website content. Finally, we would like to thank GlaxoSmithKline for the unrestricted educational grant that supported the development and delivery of the website.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

This study involves human participants but was exempted. Healthcare providers signed a Digital Protection Agreement which states that only anonymous data will be used for the purpose of service evaluation. The purpose of service evaluation is to evaluate the effectiveness of the Your COVID Recovery^® digital programme. Moreover, the purpose of processing this information is to observe, analyse and record on a structured online rehabilitation programme for patients diagnosed with COVID or suspected COVID. Participants gave informed consent to participate in the study before taking part.

Footnote

Author contributors PHIL-E (guarantor): completed data collection/analysis and prepared the manuscript. MMB, ED, SJS: made significant contributions to analysis and manuscript development. MMB, ED, AH, GM, EC, ACNG, NG, SJS: reviewed and approved the final manuscript.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

References

¹ Stavem K, Ghanima W, Olsen MK, et al. Persistent symptoms 1.5-6 months after COVID-19 in non-hospitalised subjects: a population-based cohort study. Thorax 2021; 76: 405–7. doi:10.1136/thoraxjnl-2020-216377 http://www.ncbi.nlm.nih.gov/pubmed/33273028

² Evans RA, McAuley H, Harrison EM, et al. Physical, cognitive, and mental health impacts of COVID-19 after hospitalisation (PHOSP-COVID): a UK multicentre, prospective cohort study. Lancet Respir Med 2021; 9: 1275–87. doi:10.1016/S2213-2600(21)00383-0 http://www.ncbi.nlm.nih.gov/pubmed/34627560

³ National Institute for Health and Care Excellence. COVID-19 rapid guideline: managing the long-term effects of COVID-19, 2021. Available: https://www.nice.org.uk/guidance/ng188 [Accessed 15 Nov 2021 ].

⁴ Census. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK, 2022. Available: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1june2022 [Accessed 28 Jun 2022 ].

⁵ Li Jian'an, Xia W, Zhan C, et al. A telerehabilitation programme in post-discharge COVID-19 patients (TERECO): a randomised controlled trial. Thorax 2022; 77: 697–706. doi:10.1136/thoraxjnl-2021-217382 http://www.ncbi.nlm.nih.gov/pubmed/34312316

⁶ NHS England and Improvement. Long COVID: the NHS plan for 2021/22, 2021. Available: https://www.england.nhs.uk/coronavirus/publication/long-covid-the-nhs-plan-for-2021-22/ [Accessed 15 Dec 2021 ].

⁷ Devlin NJ, Brooks R. EQ-5D and the EuroQol group: past, present and future. Appl Health Econ Health Policy 2017; 15: 127–37. doi:10.1007/s40258-017-0310-5 http://www.ncbi.nlm.nih.gov/pubmed/28194657

⁸ EuroQol Research Foundation. EQ-5D, 2021. Available: https://euroqol.org/ [Accessed 10 Dec 2021 ].

⁹ Jones P, Harding G, Wiklund I, et al. Improving the process and outcome of care in COPD: development of a standardised assessment tool. Prim Care Respir J 2009; 18: 208–15. doi:10.4104/pcrj.2009.00053 http://www.ncbi.nlm.nih.gov/pubmed/19690787

¹⁰ Daynes E, Gerlis C, Briggs-Price S, et al. Copd assessment test for the evaluation of COVID-19 symptoms. Thorax 2021; 76: 185–7. doi:10.1136/thoraxjnl-2020-215916 http://www.ncbi.nlm.nih.gov/pubmed/33148809

¹¹ Daynes E, Gerlis C, Chaplin E, et al. Early experiences of rehabilitation for individuals post-COVID to improve fatigue, breathlessness exercise capacity and cognition - A cohort study. Chron Respir Dis 2021; 18: 14799731211015691. doi:10.1177/14799731211015691 http://www.ncbi.nlm.nih.gov/pubmed/33957805

¹² Zanini A, Aiello M, Adamo D, et al. Estimation of minimal clinically important difference in EQ-5D visual analog scale score after pulmonary rehabilitation in subjects with COPD. Respir Care 2015; 60: 88–95. doi:10.4187/respcare.03272 http://www.ncbi.nlm.nih.gov/pubmed/25336531

¹³ Bae E, Choi S-E, Lee H, et al. Validity of EQ-5D utility index and minimal clinically important difference estimation among patients with chronic obstructive pulmonary disease. BMC Pulm Med 2020; 20: 73. doi:10.1186/s12890-020-1116-z http://www.ncbi.nlm.nih.gov/pubmed/32293387

¹⁴ Kon SSC, Canavan JL, Jones SE, et al. Minimum clinically important difference for the COPD assessment test: a prospective analysis. Lancet Respir Med 2014; 2: 195–203. doi:10.1016/S2213-2600(14)70001-3 http://www.ncbi.nlm.nih.gov/pubmed/24621681

¹⁵ McGregor G, Sandhu H, Bruce J, et al. Rehabilitation exercise and psycholoGical support after covid-19 infection' (regain): a structured summary of a study protocol for a randomised controlled trial. Trials 2021; 22: 8. doi:10.1186/s13063-020-04978-9 http://www.ncbi.nlm.nih.gov/pubmed/33407804