Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality criteria for services

Abstract

Background Approximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks. Patients call this long Covid. We sought to document the lived experience of such patients, their accounts of accessing and receiving healthcare, and their ideas for improving services. Method We held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their personal stories and comment on other stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, the clinical relationship, access to care, and service redesign. Results The sample was 70% female, aged 27-73 years, and comprised White British (74%), Asian (11%), White Other (7%), Black (4%), and Mixed (4%). 27 were doctors and 23 other health professionals. Approximately 10% had been hospitalised. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others described feeling fobbed off); and possible critical events (e.g. deterioration after being unable to access services). Emotional touch points in participant experiences informed ideas for improving services. Conclusion Quality principles for a long Covid service should 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.

Long COVID and the role of physical activity: a qualitative study

“…Previous research involving people with long COVID has reported a substantial impact on identity. 10 11 Our study extends these findings; people for whom PA was a core aspect of their identity pre-COVID-19 were more inclined to push themselves physically, willing to risk relapses or view them as constructive. Their mental health was also more contingent on being able to undertake PA. PA identity has previously been associated with commitment, ability and self-regulation, with research suggesting that identity–behaviour discrepant situations can create negative affect.…”

“…Our findings illustrate the impact of long COVID on the energy reserves of individuals, which is consistent with previous reports. 10 11 Our study highlights the importance of activities of daily living (ADLs (eg, housework, gardening) and outdoor activity to the normality and mental health of people with long COVID interviewed. ADLs have been defined as fundamental skills required for independent living 25 and are often used to assess physical function.…”

Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study

“…1 2 Frequent symptoms that were reported are fatigue, impaired physical and cognitive function, headache, breathlessness, palpitations and many other symptoms, impairing activities of daily living in many patients. [3][4][5][6][7] A recent publication of a patient survey of long COVID in younger patients described diverse symptoms with fatigue, post-exertional malaise (PEM), and cognitive dysfunction as most frequent requiring a reduced work schedule in almost half and inability to work in 22% of patients. 3 PEM describes an intolerance to mental and physical exertion, which triggers an aggravation of symptoms typically lasting for more than 14 hours up to several days 8 .…”

Intra-host evolution during SARS-CoV-2 persistent infection

“…weeks (Greenhalgh et al 2020;Ladds et al). The high prevalence of persistent cases indicates that this is not a rare phenomenon and needs to be explored to better control epidemic spread.…”

“…Although most of our patients harbored the D614G mutation, which might contribute to its persistence in upper airway samples, such mutation is absent in patients 27 and 29, which belong to B.2.2 lineage. From all Brazilian genomes sequenced so far, more than 96% have this signature, a portion that is much higher than expected for persistent infections (Greenhalgh et al 2020;Ladds et al). Altogether, All rights reserved.…”