Table 1.

Characteristics of included studies

Study (country)	Study methods and setting	Participant characteristics and sample size	Main results
Assaf et al (multinational)19	Online survey 21 April–2 May 2020 circulated to long COVID support groups and through social media. Quantitative and qualitative data collection.	n=640 Patients with symptoms lasting >2 weeks 62.7% aged 30–49 years; 76.0% white; 76.6% female.	Cyclical symptoms experienced unexpectedly for ≥6 weeks. Stigma experienced by patients with long COVID. Impacts on lifestyle, including physical activity.  Dismissed or misdiagnosed by medical professionals . Sentiment analysis conducted on satisfaction with medical staff and on sharing experiences.
Davis et al (multinational)16	Online survey 6 September–25 November 2020 circulated to online patients support groups and social media. Quantitative and qualitative data collection.	n=3762 Patients with symptoms lasting >28 days 60.8% aged 40–59; 85.3% white; 78.9% female.	Patients with long COVID reported prolonged multisystem involvement and significant disability. The most frequent symptoms reported after 6 months were: fatigue, postexertional malaise, cognitive dysfunction.
Kingstone et al (UK)17	Recruitment through social media (Twitter or Facebook) and snowball sampling July–August 2020. Semistructured interviews by telephone or video call (duration 35–90 min). Thematic analysis using principles of constant comparison.	n=24 Self-reported persistent symptoms following acute COVID-19 illness. Age range 20–68 years; 87.5% white British; 79.2% female.	Four key themes reported in results:  ‘Hard and heavy work’ of enduring and managing symptoms, trying to find answers, and accessing care. Living with uncertainty and fear. Importance of finding the 'right' GP. Recovery and rehabilitation: what would help?
Ladds et al (UK)18	Participants recruited from UK-based long COVID patient support groups, social media and snowball sampling. Individual narrative interview (telephone or video) or participation in an online focus group. Constant comparison method of data analysis.	Total n=114 55 interviews (73% female), median age 48 (range 31–68) years; 59 focus group participants (68% female), median age 43 (range 27–73) years.	Five key themes reported in results: The illness experience. Accessing care.  Relationships (or lack of) with clinicians. Emotional touchpoints in encounters with health services. Ideas for improving services.
Maxwell (UK)1	Focus group of COVID-19 Facebook group members.	Not reported.	Four key themes reported in results: Expectation. Symptom journey. Being doubted. Support.

GP, general practitioner.