Long COVID evidence resources

Recent evidence around the diagnosis, management and rehabilitation of people living with 'Long COVID'. New resources are contained in the regular COVID-19 Evidence Bulletins that we produce.

Long COVID overviews

Understanding the lived experience of Long Covid: A rapid literature review [Baz, S et al. University College London, December 2021] [This rapid literature review explores existing studies into Long Covid (LC) and particularly captures the narratives of people who have adapted to live with LC. The literature reviewed in this paper largely focuses on providing an initial understanding of LC, how the illness emerged, and the fluctuating symptoms managed by those with LC] Available here

Getting to grips with long covid [Le Page, M. New Scientist, June 2021] [Millions of people worldwide are experiencing lasting symptoms from covid-19. Michael Le Page, Helen Thomson, Adam Vaughan and Clare Wilson report on what we do – and don't – know so far] Available here

Long COVID: What do we know so far? [UK COVID Symptom Study, April 2021] Available here

Coronavirus: Long Covid [House of Commons Library, January 2021] [This briefing provide an overview of long Covid, the impacts of this condition and the development of clinical guidance and services for those affected. It also provides links to further reading and Parliamentary material.] Available here

Report on Long COVID [Independent SAGE, January 2021] [Long COVID – when symptoms of COVID last for many weeks and months – affects people of all ages and even those with mild initial symptoms. Current best estimates are that between 5-10% of people who get COVID will develop Long COVID. We don’t yet know how long it takes for lingering symptoms (most commonly fatigue) to resolve, but for some people there will be permanent organ damage. New specialised services are being set up to help those with Long COVID recover. These need to be expanded across the country and existing national guidelines communicated to all clinicians.] Available here

A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid) [NIHR, October 2020] [This rapid and dynamic review draws on the lived experience of patients and expert consensus as well as published evidence to better understand the impact of ongoing effects of Covid19, how health and social care services should respond, and what future research questions might be] Available here

Guidelines on managing Long COVID

Coronavirus disease 2019 (COVID-19): Evaluation and management of adults following acute viral illness [evidence summary from UpToDate, continuously updated] [In this topic we will discuss the evaluation and management of adults during the post-acute and chronic recovery phase from COVID-19, which is based upon evolving evidence.] Available here

COVID-19 rapid guideline: managing the long-term effects of COVID-19 [NICE, November 2021]
[This guideline covers identifying, assessing and managing the long-term effects of COVID-19, often described as ‘long COVID’. NICE has made new recommendations and updated existing recommendations on identification; planning care; multidisciplinary rehabilitation; follow up, monitoring and discharge; and service organisation. NICE also updated the list of common symptoms, emphasising that these may be different for children.] Available here

Swiss Recommendations for the Follow-Up and Treatment of Pulmonary Long COVID [Funke-Chambour M. Respiration, June 2021] [Emerging evidence suggests that long-term pulmonary symptoms and functional impairment occurs in a proportion of individuals following SARS-CoV-2 infection. Although the proportion of affected patients remains to be determined, physicians are increasingly being confronted with patients reporting respiratory symptoms and impairment beyond the acute phase of COVID-19] Available here

Managing the long-term effects of COVID-19 [Scottish Intercollegiate Guidelines Network, December 2020] [SIGN 161. This guideline on managing the long-term effects of COVID-19 (also known as long COVID) covers the care of people who have signs and symptoms that develop during or after an infection that is consistent with COVID-19, which continue for more than four weeks and are not explained by an alternative diagnosis. Targeted areas of the guideline will be continuously reviewed and updated in response to emerging evidence.] Available here

COVID-19: long-term health effects [Public Health England, September 2020] [Information and guidance on persistent health problems reported following acute COVID-19 disease. There is accumulating evidence to suggest that cases of coronavirus (COVID-19) who have experienced both mild and severe symptoms can experience long-term health effects. This document provides information on the health problems reported in COVID-19 cases following acute disease, and guidance for healthcare professionals on how to advise recovering COVID-19 patients.] Available here

Health Services

Enhancing the management of long COVID in general practice: a scoping review [Brennan, A. BJGP Open, March 2022] [The findings show that GPs can and have played a key role in the management of Long COVID, and that patient care can be improved through better understanding of patient experiences, standardised approaches for symptom identification/treatment, and facilitation of access to multidisciplinary specialist services when needed. Future research evaluating focused GP interventions is needed.] Available here

Long COVID care pathways: a systematic review [Wolf, S. Austrian Institute for Health Technology Assessment, November 2021] [The present systematic review aimed to support preparations and adjustments in the long COVID care planning in Austria by giving (1) an overview of recommendations about long COVID care pathways as well as (2) examples of already existing care structures in selected European countries] Available here

Coronavirus (COVID-19): Scotland's Long Covid service [Scottish Government, November 2021] [The Scottish Government has published a paper setting out how it will support people with Long Covid.] Available here

What models of care are available for patients recovering from COVID-19 with persisting symptoms?  What models of care are available for long COVID, or post-acute sequelae of COVID-19? [evidence summary from Irish National Health Library and Knowledge Service, July 2021] Available here

Enhanced service specification: Long COVID 2021/22 [NHS England, July 2021] [This enhanced service specification aims to support general practice in managing Long COVID.] Available here

Long COVID: the NHS plan for 2021/22, version 1, June 2021 [NHS England, June 2021] [The Long COVID Plan 21/22 builds on the five-point plan which outlines 10 key next steps to be taken to support those suffering from long COVID.] Available here

National guidance for post-COVID syndrome assessment clinics [NHS England, updated April 2021] [Commissioning guidance to assist local healthcare systems to establish post-COVID assessment clinics for patients experiencing long-term health effects following COVID-19 infection.] Available here

Care Models for Long COVID: A Rapid Systematic Review [SPOR Evidence Alliance, June 2020] [This review identifies international care models for long covid rehabilitation. It describes the integration of primary care, rehabilitation services and specialized clinics for long covid.] Available here

A Multidisciplinary NHS COVID-19 Service to Manage Post-COVID-19 Syndrome in the Community [Parkin, A. Journal of Primary Care and Community Health, April 2021] [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.] Available here

Persistent symptoms after Covid-19: qualitative study of 114 "long Covid" patients and draft quality principles for services [Ladds E. BMC Health Services Research, December 2020]
[Suggested quality principles for a long Covid service include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.] Available here

NHS launches 40 ‘long COVID’ clinics to tackle persistent symptoms [NHS England and NHS Improvement, November 2020] Available here

Rehabilitation and recovery

Addressing nutrition in the road map of recovery for those with long COVID-19.
Holdoway A. British Journal of Community Nursing, May 2021] [Key Points: Poor nutrition is reflected in the high incidence of unintentional weight loss among COVID-19 survivors; Nutrition screening for patients with COVID-19 should not be overlooked; it is paramount to identifying malnutrition risk associated with unintentional weight loss and guiding subsequent advice; Dietary advice combined with strength training for those with muscle loss and weakness, should be an integral part of the care for those severely affected by COVID-19...] Available here. NHS OpenAthens account required

Rehabilitation of adults who are hospitalised due to acute Covid-19 or long Covid: physiotherapy service delivery [Chartered Society of Physiotherapy, April 2021] [The standards apply to rehabilitation for any episode of care in a hospital setting. This includes people who were not admitted to hospital during the acute stage of Covid-19 infection and readmission of people who were hospitalised due to acute Covid-19. The standards do not apply to end of life rehabilitation care pathways.] Available here

Framework for supporting people through Recovery and Rehabilitation during and after the COVID-19 Pandemic [Scottish Government, August 2020]
[The Scottish Government has published a strategic framework to inform and shape the provision of rehabilitation and recovery services across Scotland during and after the COVID-19 pandemic. It outlines a whole system approach, a Once for Scotland Rehabilitation Strategy, to deliver rehabilitation to everyone who needs it.] Available here

Rehabilitation of patients post-COVID-19 infection: a literature review [Demeco, A. Journal of International Medical Research, August 2020] [Given the lack of guidelines in English on the rehabilitation of COVID-19 patients, we conducted a review of the most recent reports.] Available here

Responding to COVID-19 and Beyond: Framework for assessing early rehabilitation needs following treatment in intensive care [Intensive Care Society] Available here

Covid-19 community rehabilitation: physiotherapy service delivery [Chartered Society of Physiotherapy, September 2020] [These standards cover community rehabilitation and physiotherapy care for adults of 18 years and over with Covid-19. The standards apply to anyone with rehabilitation needs who has or has had Covid-19. The standards are relevant to people at all stages of their Covid-19 recovery, their families and carers. This is whether their care is managed in community settings throughout or if they were admitted to hospital at any stage.] Available here

Systematic Review of Changes and Recovery in Physical Function and Fitness After Severe Acute Respiratory Syndrome-Related Coronavirus Infection: Implications for COVID-19 Rehabilitation [Rooney S. Physical Therapy, July 2020] [Physical function and fitness are impaired following SARS-CoV infection, and impairments may persist up to 1 to 2 years postinfection. Researchers and clinicians can use these findings to understand the potential impairments and rehabilitation needs of people recovering from the current COVID-19 outbreak.] Available here

Treatment

Post-Acute Sequelae of COVID-19 Critical Illness [Schwab K. Critical Care Clinics, January 2022] [For critically ill patients, existing knowledge about post-intensive care syndrome (PICS) represents a useful structure for understanding PASC. Post-ICU clinics leverage a multidisciplinary team to evaluate and treat the physical, cognitive, psychological sequelae central to both PICS and PASC in critically ill patients. While management through both pharmacologic and nonpharmacologic modalities can be utilized, further research into both the optimal treatment and prevention of PASC represents a key public health imperative.] Available here

Proposed subtypes of post-COVID-19 syndrome (or long-COVID) and their respective potential therapies [Shin Jie Yong and Shiliang Liu, Reviews in Medical Virology, December 2021] [While the pathophysiological mechanisms of PCS have been extensively described elsewhere, the subtypes of PCS have not. Owing to its highly multifaceted nature, this review proposes and characterises six subtypes of PCS based on the existing literature. Original studies supporting each of these subtypes are documented in this review, as well as their respective symptoms and potential interventions.] Available here

Long COVID or post-COVID-19 syndrome: putative pathophysiology, risk factors, and treatments [Yong, SJ. Infectious Diseases, May 2021] [While preliminary evidence suggests that personalized rehabilitation training may help certain long COVID cases, therapeutic drugs repurposed from other similar conditions, such as myalgic encephalomyelitis or chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and mast cell activation syndrome, also hold potential. In sum, this review hopes to provide the current understanding of what is known about long COVID.
Available here

Symptoms

A clinical case definition of post-COVID-19 condition by a Delphi consensus [Soriano JB. The Lancet Infectious Diseases, January 2022] [Post-COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset, with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include, but are not limited to, fatigue, shortness of breath, and cognitive dysfunction, and generally have an impact on everyday functioning.] Available here

Long COVID and breathlessness: an overview [Robinson P. British Journal of Community Nursing, September 2021] [Key Points: Approximately 10% of people experience prolonged symptoms following acute COVID-19 infection. All individuals with a suspected or confirmed diagnosis of acute covid should be asked about ongoing symptoms relating to long COVID; Ongoing research is being undertaken to identify and understand the impact of acute and long COVID on respiratory health; Community nurses have a role in supporting individuals with long COVID in monitoring and supporting recovery.] Available here

Persistence of long COVID symptoms in COVID-19 survivors worldwide and its potential pathogenesis - A systematic review and meta-analysis [Fahriani, M. Narra J, August 2021] [The study sought to determine the prevalence of persistent long COVID symptoms such as anxiety, depression, dizziness, chest pain, sleep difficulty, palpitations, weight loss, and hair loss among coronavirus disease 2019 (COVID-19) survivors worldwide and to discuss the potential pathogeneses.] Available here

Sequelae, persistent symptomatology and outcomes after COVID-19 hospitalization: the ANCOHVID multicentre 6-month follow-up study [Romero-Duarte, A. BMC Medicine, May 2021] [COVID-19 cases requiring hospitalization during the first wave of the pandemic developed a significant range of mid- to long-term SPS. A detailed list of symptoms and outcomes is provided in this multicentre study. Identification of possible factors associated with these SPS could be useful to optimize preventive follow-up strategies in primary care for the coming months of the pandemic.] Available here

Vaccination

Do vaccines protect from long COVID? [Venkatesan P. The Lancet Respiratory Medicine, January 2022] [Article notes data so far on long Covid (LC) are worrying, with more research needed to gauge the full spectrum of symptoms to facilitate diagnosis. Emerging data suggest those vaccinated are less likely to report LC symptoms, which is an additional driver to support vaccination.] Available here

Long COVID in healthcare staff

Updated Guidance on post-COVID syndrome [Faculty of Occupational Medicine, March 2022] [The Faculty has updated its Guidance on post-COVID syndrome aimed at healthcare professionals and
employers. The Guidance for healthcare professionals aims to assist them on return to work for people with post-COVID syndrome. This Guidance for managers and employers aims to help them in facilitating the return to work of employees who may find this difficult because of post-COVID syndrome.] Available here

Guidelines for supporting our NHS people affected by Long COVID [NHS England and NHS Improvement, Feb 2022] [Guidelines to help NHS line managers and leaders understand what Long COVID is, and how they can support colleagues who are experiencing its symptoms.] Available here

Persistent post-covid symptoms in healthcare workers [Gaber T A-Z K. Occupational Medicine] [Our data suggest that about a third of HCW who responded to the survey were still struggling to cope with the symptoms of what is now known as long covid several months after the acute COVID-19 infections. The overwhelming majority of this group seem to be reluctant to neither seek medical advice nor take sick leave.] Available here

Long Covid Support for staff [Shrewsbury and Telford Hospital NHS Trust] The SaTH Intranet has a page about Long Covid support, including a leaflet for staff.
Available here [only available on SaTH PCs]

Long COVID in children and adolescents

Long COVID symptoms in SARS-CoV-2-positive adolescents and matched controls (LongCOVIDKidsDK): a national, cross-sectional study [Berg SK. The Lancet Child & Adolescent Health, Feb 2022] [Participants with SARS-CoV-2-positive tests had more long-lasting symptoms and sick leave, whereas participants in the control group had more short-lasting symptoms and worse quality of life. Knowledge of long COVID in adolescents is important to guide clinical recognition and management of this condition.] Available here [NHS OpenAthens account required] 

Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk): a national matched cohort study [Stephenson T. The Lancet Child & Adolescent Health, Feb 2022] [Adolescents who tested positive for SARS-CoV-2 had similar symptoms to those who tested negative, but had a higher prevalence of single and, particularly, multiple symptoms at the time of PCR testing and 3 months later. The multiple and varied symptoms show that a multicomponent intervention will be required, and that mental and physical health symptoms occur concurrently, reflecting their close relationship.] Available here

How Common Is Long COVID in Children and Adolescents? [Zimmerman, P. The Pediatric Infectious Disease Journal, September 2021] [We reviewed the 14 studies to date that have reported persistent symptoms following COVID in children and adolescents] Available here

Pediatric long-COVID: An overlooked phenomenon? [Brackel C.L.H. Pediatric Pulmonology, June 2021] [Our study shows that long-COVID is also present in the pediatric population. The main symptoms resemble those previously described in adults. This novel condition demands a multidisciplinary approach with international awareness and consensus to aid early detection and effective management.] Available here

Prevalence

Updated estimates of the prevalence of post-acute symptoms among people with coronavirus (COVID-19) in the UK: 26 April 2020 to 1 August 2021 [Office for National Statistics] [Experimental estimates of the percentage of people testing positive for Covid-19 who experience ongoing symptoms for at least 4 weeks after infection (‘long Covid’) range from 3.0% to 11.7% using three approaches, analysing data up to August 2021.] Available here

Post-acute and long-COVID-19 symptoms in patients with mild diseases: a systematic review [van Kessel, S. Family Practice, July 2021] [There is already some evidence that symptoms of mild COVID-19 persist after 3 weeks in a third of patients. However, there is a lack of data about symptoms persisting after 3 months (long-COVID). More research is needed to help GPs in managing long-COVID.] Available here

How long does long COVID last? [ZOE COVID Symptom Study, July 2021] [Data from our COVID Symptom Study suggests that while most people recover from COVID-19 within two weeks, one in ten people may still have symptoms after three weeks, and some may suffer for months.] Available here

Characteristics and predictors of acute and chronic post-COVID syndrome: A systematic review and meta-analysis [EClinical Medicine, The Lancet, May 2021] [A significant proportion of individuals experience lingering and debilitating symptoms following acute COVID-19 infection. NICE have coined the persistent cluster of symptoms as post-COVID syndrome. The aim of this review was to detail the prevalence of clinical features and identify potential predictors for acute and chronic post-COVID syndrome.] Available here

Mental Health

Long COVID and mental health [Palmer SJ. British Journal of Community Nursing, August 2021] [Increasingly, mental health issues such as anxiety and depression, as well as psychosis have been linked to the condition; Neurological consequences linked to long COVID include confusion and dementia symptoms. These may be linked to a cytokine ‘storm’ from the immune response to the infection, which affects the blood brain barrier; Psychological therapies, self-help strategies for coping and self-care, alongside medication, may help treat the mental health symptoms of long COVID.] Available here

The high mental health burden of “Long COVID” and its association with on-going physical and respiratory symptoms in all adults discharged from hospital [The European Respiratory Journal, April 2021] [A study has examined the mental health burden of Long Covid and its association with ongoing physical and respiratory symptoms in adults discharged from hospital.] Available here

Scales and scoring systems

Construct validity of the Post-COVID-19 Functional Status Scale in adult subjects with COVID-19 [Machado FVC et al. Health and Quality of Life Outcomes, February 2021] [An increasing number of subjects are recovering from COVID-19, raising the need for tools to adequately assess the course of the disease and its impact on functional status. We aimed to assess the construct validity of the Post-COVID-19 Functional Status (PCFS) Scale among adult subjects with confirmed and presumed COVID-19.] Available here

Determinants of Persistent Post COVID-19 symptoms: Value of a Novel COVID-19 symptoms score [Galal, I. The Egyptian Journal of Bronchology, February, 2021] [Being a newly emerging disease little is known about its long-lasting post COVID-19 consequences. Aim of this work is to assess the frequency, patterns and determinants of persistent post COVID-19 symptoms and to evaluate the value of a proposed Novel COVID-19 symptoms score] Available here. Please note, this article is a pre-print and has not been peer-reviewed.

Resources for people living with Long COVID

Long Covid Support for staff [Shrewsbury and Telford Hospital NHS Trust] The SaTH Intranet has a page about Long Covid support, including a leaflet for staff.
Available here [only available on SaTH PCs]

Long-term effects of coronavirus (long COVID) [NHS] Available here

Long Covid Support [peer support and advocacy group for people living with Long Covid] Available here

Patient education: Recovery after coronavirus disease 2019 (COVID-19) (The Basics) [patient education leaflet from UpToDate] Available here

Long COVID [Scottish Intercollegiate Guidelines Network] [This booklet is for people who have had a COVID-19 infection and have ongoing signs and symptoms] Available here

Supporting your recovery after COVID-19 (Your COVID Recovery) [NHS] Available here

Recovering from COVID-19: Post viral-fatigue and conserving energy [Royal College of Occupational Therapists, May 2020] [Rehabilitation is fast becoming the new priority in dealing with the impact of this pandemic and is crucial for people recovering from COVID-19 infection. We’ve published three guides to support people to manage post-viral fatigue and conserve their energy as they recover from COVID-19. These guides are endorsed by the Intensive Care Society.] Available here