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Methods

Development

This guideline was developed and updated by NICE, SIGN and RCGP using the methods and process in the NICE interim process and methods for guidelines developed in response to health and social care emergencies. This included convening an independent advisory expert panel, scoping, identifying and reviewing evidence, panel discussion of recommendations, targeted peer review with stakeholders and conducting an equalities impact assessment. A further detailed description of the specific methods used for this guideline is available here.

The guideline developers convened an expert advisory panel including representatives from relevant medical specialties with direct experience in the long-term effects of COVID-19 and people with lived experience of the long-term effects of COVID-19.

Review and updating

SIGN, NICE and the RCGP have committed to developing the guideline using a ‘living’ approach which involves identification of relevant published evidence or changes in practice that could impact on the recommendations to allow timely incorporation of new evidence in this area. This includes weekly searches for new published evidence on this topic and a search for ongoing studies. We will check for publication of these ongoing studies regularly. We will update the guideline when substantial new evidence becomes available.

Evidence reviews

For the November 2021 update, new evidence reviews were undertaken for key questions on: 

Additionally, updates were undertaken to evidence reviews on: 

Expert testimony was heard for the key questions of 

There were no updates to evidence reviews on investigations, monitoring and referral, service organisation and views and experiences of patients, their families and carers. The evidence reviews for the first version of the guideline are available as follows:

Additional references

The references for the original version of this guideline are embedded in the rationale sections, where appropriate. The following additional references were included in evidence reviews for the November 2021 update.

References

1  Antonelli M, Penfold R, Merino J et al: Post-vaccination SARS-CoV-2 infection: risk factors and illness profile in a prospective, observational community-based case-control study. 2021; Pubmed Journal Website

2  Arnold DT, Milne A, Samms E et al: Symptoms After COVID-19 Vaccination in Patients With Persistent Symptoms After Acute Infection: A Case Series. Annals of internal medicine 2021; Pubmed Journal

3  Strain D, Sherwood O, Banerjee A et al: The impact of COVID vaccination on symptoms of Long COVID. An international survey of people with lived experience of long COVID. SSRN/Lancet 2021; Website

4  Domingo FR, Waddell LA, Cheung AM et al: Prevalence of long-term effects in individuals diagnosed with COVID-19: a living systematic review. medrxiv preprint Journal Website

5  Michelen M, Manoharan L, Elkheir N et al: Characterising long-term covid-19: a rapid living systematic review. medrxiv preprint Journal Website

6  Ayoubkhani D, Khunti K, Nafilyan V et al: Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. BMJ (Clinical research ed.) 2021;372 n693- Journal Website

7  Taquet M, Geddes JR, Husain M et al: 6-month neurological and psychiatric outcomes in 236 379 survivors of COVID-19: a retrospective cohort study using electronic health records. The Lancet. Psychiatry 2021; Journal Website

8  Whitaker M, Elliott J, Chadeau-Hyam M et al: Persistent symptoms following SARS-CoV-2 infection in a random community sample of 508,707 people. 2021; Website

9  Whittaker Hannah R, Gulea C, Koteci A et al: Post-acute COVID-19 sequelae in cases managed in the community or hospital in the UK: a population based study. medrxiv preprint Journal  Website

10  Nasserie T, Hittle M, Goodman SN:  Assessment of the Frequency and Variety of Persistent Symptoms Among Patients With COVID-19: A Systematic Review. JAMA network open 2021;4(5):e2111417- Journal  Website

11  Thompson E, Williams D, Walker A et al: Risk factors for long COVID: analyses of 10 longitudinal studies and electronic health records in the UK. medrxiv preprint 2021; Journal  Website

12  Menges D, Ballouz T, Anagnostopoulos A et al: Estimating the burden of post-COVID-19 syndrome in a population-based cohort study of SARS-CoV-2 infected individuals: Implications for healthcare service planning. medrxiv preprint 2021; Journal

13  Davis HE, Assaf GS, McCorkell L et al: Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine 2021; Journal Website

14  Delbressine JM, Houben-Wilke S, Vaes AW et al: The impact of post-covid-19 syndrome on self-reported physical activity. International Journal of Environmental Research and Public Health 2021;18(11):6017 -Journal  Website

15  Lambert N, Corps S, El-Azab SA et al: COVID-19 Survivors? Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection. medrxiv preprint 2021; Journal

16  Vaes AW, Delbressine JM, Houben-Wilke S et al: Recovery from COVID-19: A sprint or marathon? 6-month follow-up data from online long COVID-19 support group members. ERJ Open Research 2021;7(2):00141-2021 Journal Website

17  Ziauddeen N, Gurdasani D, Hara Margaret E et al: Characteristics of Long Covid: findings from a social media survey. medrxiv preprint  Journal Website

18  The OpenSAFELY Collaborative, Walker AJ, MacKenna B et al: Clinical coding of long COVID in English primary care: a federated analysis of 58 million patient records in situ using OpenSAFELY. medrxiv preprint  Journal Website

19  Brackel CLH, Lap CR, Buddingh EP et al: Pediatric long-COVID: An overlooked phenomenon? Pediatric pulmonology 2021; Journal Website

20  Buonsenso D: Clinical Characteristics, Activity Levels and Mental Health Problems in Children with Long COVID: A Survey of 510 Children. Preprints 2021; Website

21  Buonsenso D, Munblit D, De Rose C et al: Preliminary Evidence on Long Covid in children. Acta paediatrica (Oslo, Norway: 1992) 2021; Journal  Website

22  Chevinsky JR, Tao G, Lavery AM et al: Late conditions diagnosed 1-4 months following an initial COVID-19 encounter: a matched cohort study using inpatient and outpatient administrative data - United States, March 1-June 30, 2020. Clinical infectious diseases: an official publication of the Infectious Diseases Society of America 2021; Journal  Website

23  Miller F, Nguyen V, Navaratnam Annalan MD et al: Prevalence of persistent symptoms in children during the COVID-19 pandemic: evidence from a household cohort study in England and Wales. medrxiv preprint Journal Website

24  Molteni E, Sudre C, Helene et al:  Illness duration and symptom profile in a large cohort of symptomatic UK school-aged children tested for SARS-CoV-2. medrxiv preprint Journal  Website

25  Osmanov IM, Spiridonova E, Bobkova P et al: Risk factors for long covid in previously hospitalised children using the ISARIC Global follow-up protocol: A prospective cohort study. medrxiv preprint  Journal Website

26  Sterky E, Olsson-Akefeldt S, Hertting O et al: Persistent symptoms in Swedish children after hospitalisation due to COVID-19. Acta paediatrica (Oslo, Norway: 1992) 2021; Journal Website

27  Penner J, Abdel-Mannan O, Grant K et al: 6-month multidisciplinary follow-up and outcomes of patients with paediatric inflammatory multisystem syndrome (PIMS-TS) at a UK tertiary paediatric hospital: a retrospective cohort study. The Lancet. Child & adolescent health 2021; Journal Website

28  Ludvigsson JF: Case report and systematic review suggest that children may experience similar long-term effects to adults after clinical COVID-19. Acta paediatrica (Oslo, Norway: 1992) 2020; Journal Website

29  Stephenson T, Pereira SP, Shafran R et al: Long COVID - the physical and mental health of children and non-hospitalised young people 3 months after SARS-CoV-2 infection; a national matched cohort study (The CLoCk) Study. Research Square pre-prints 2021; Website