From doctors as patients: a manifesto for tackling persisting symptoms of covid-19

Alwan, Nisreen A; Attree, Emily; Blair, Jennifer; Bogaert, Debby; Bowen, Mary-Ann; Boyle, John; Bradman, Madeleine; Briggs, Tracy A; Burns, Sarah; Campion, Daniel; Cushing, Katherine; Delaney, Brendan; Dixon, Chris; Dolman, Grace; Dynan, Caitriona; Frayling, Ian Martin; Freeman-Romilly, Nell; Hammond, Iulia; Judge, Jenny; Järte, Linn; Lokugamage, Amali; MacDermott, Nathalie; Mackinnon, Mairi; Majithia, Visita; Northridge, Tanya; Powell, Laura; Rayner, Colin R.; Read, Ginevra; Sahu, Ekta; Shand, Claudia; Small, Amy; Strachan, Cara; Suett, Jake; Sykes, Becky; Taylor, Sharon; Thomas, Kevin V.; Thomson, Margarita; Wiltshire, Alexis; Woods, Victoria

doi:10.1136/bmj.m3565

Cited by 54 publications

(71 citation statements)

References 6 publications

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“…Perhaps the most important contribution our findings make to previously published data is to affirm the experience of patients with long Covid previously published in auto-ethnographies, 53 patient-led surveys, 4 narrative reviews, 54 commentaries, 1 55 and the views of ‘doctors as patients’. 56 Our findings also resonate to a large extent with surveys on patients discharged from hospital. 7 9 57 These sources, like our own dataset, emphasise the varied manifestations, uncertain course and sometimes protracted recovery from this disorienting and new illness; the stigma of not being believed; the frustration of scientific and medical uncertainty and ignorance; and problems accessing health services.…”

Section: Discussionsupporting

confidence: 77%

“…Many of these principles accord strongly with a recently published manifesto written by a group of doctors with long Covid which calls for: greater emphasis on research and surveillance; appropriate development of, and access to, clinical services; and significant patient involvement in both research and service development. 56 Whilst sharing practical advice, filling gaps in the formal support system, and campaigning for better and more consistent services.…”

Section: Implications For Servicesmentioning

confidence: 99%

“…The combination of clinical and experiential knowledge offered by such communities is an important resource for both service planning and research. 56 It is time to collaborate with these groups to take forward a genuinely patient-centred research agenda.…”

Section: Implications For Servicesmentioning

confidence: 99%

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

Ladds

Rushforth

Wieringa

et al. 2020

Preprint

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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.

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Section: Discussionsupporting

confidence: 77%

Section: Implications For Servicesmentioning

confidence: 99%

See 1 more Smart Citation

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

Ladds

Rushforth

Wieringa

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

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“…In the wake of the first wave of the ongoing global pandemic, it has become imminently clear that coronavirus disease 2019 (COVID-19) has brought with it a whole new clinical syndrome: "long COVID" (1,2). Hence, after recovery from the acute viral infection, a remarkably large proportion of patients, who initially coined themselves "long haulers" in social media-based patient communities for COVID-19 survivors suffer from persistent and often invalidating symptoms, including dyspnoea, chest pain, tachycardia, post-viral brain fog, exercise intolerance, and extreme fatigue to mention a few (3,4).…”

Section: Introductionmentioning

confidence: 99%

Vascular Inflammation as a Therapeutic Target in COVID-19 “Long Haulers”: HIITing the Spot?

Christensen

Berg

2021

Front. Cardiovasc. Med.

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“…2,3,4 HCWs currently account for approximately 25% of the infected population in Ireland with information on the longer term effects of SARS-CoV-2 infection in this cohort continuing to emerge. 5,6,7 Robust testing strategies have shown to be an important tool in slowing down the pandemic, supporting decisions on infection control and improving the knowledge of virological aspects of SARS-CoV-2. 8,9 However, testing should be accompanied by clear standardized comprehensible information on performance for both clinicians and patients.…”

Section: Introductionmentioning

confidence: 99%

Persistence of SARS-CoV-2 antibodies and symptoms in an Irish Healthcare Worker (HCW) setting: Results of the COVID Antibody Staff Testing (CAST) Study

Griffin

Tully

Cody

et al. 2021

Preprint

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Objectives:This study examined the natural history, including incidence and prevalence, of SARS-CoV-2 antibodies serially up to 6 months post infection in Irish Healthcare Workers (HCW) at a large urban academic obstetric unit, during the first pandemic peak from March to September 2020. Design: This single centre observational study profiled SARS-CoV-2 incidence and infection rates using viral RNA detected using oro/naso-pharyngeal swabs accompanied by serological assessment of study participants for the presence of antibodies. Participant demographics were also collected alongside information on clinical symptoms and time to recovery. Real time polymerase-chain-reaction (RT-PCR) for viral RNA detection was performed using the Allplex SARS-CoV-2 platform (SeeGene Inc.,Rep. of Korea) or the GeneXpert SARS-CoV-2 platform (Cepheid, USA). Intravenous blood samples were obtained at the time of initial swab and at up to 4 time points thereafter, for the serological assessment of antibodies against both the spike and nucleocapsid protein antigens of SARS-CoV-2. Serological response was measured using the Captia; Anti-SARS-CoV-2 (IgG) ELISA (Trinity Biotech) as part of a clinical performance evaluation. Two other testing methods were also used; the Anti-SARS-CoV-2 ELISA (IgG) assay (EuroImmun) and the Abbott Anti-SARS-CoV-2 IgG 75 kit on the Architect i2000SR instrument (Abbott Laboratories). Setting: Academic Tertiary Maternity Hospital in Dublin, Ireland. Participants: We invited symptomatic and asymptomatic healthcare workers employed at the Rotunda Maternity Hospital to participate in the CAST study. Main Outcome Measures: The CAST study aimed to examine the infection rate and clinical symptoms of SARS-CoV-2 in HCWs and to determine the presence and longevity of antibodies in this group. We also sought to examine the clinical utility of the Captia; Anti-SARS-CoV-2 (IgG) ELISA (Trinity Biotech) and to compare it to the current accepted gold standard platform in Ireland. Results: By July 2020, 398 tests had been completed on symptomatic staff with clinical suspicion of SARS-CoV-2 infection. In this cohort, 14% (n=54/398) had detectable levels of SARS-CoV-2 RNA, indicating a positive diagnosis for Coronavirus disease 2019 (COVID-19). The CAST study enrolled 137 HCW, with 86 participants symptomatic at time of swab collection and a further 51 asymptomatic control participants. SARS-CoV-2 RNA was detected in 45/86 (52%) symptomatic study participants and serological positivity was confirmed in 44/45 (98%) of those participants. Asymptomatic SARS-CoV-2 RNA infection was detected in 2/51 control participants (4%), with a seropositivity rate in this group of 8% (4/51). We demonstrate that 95% of SARS-CoV-2 positive participants have detectable levels of antibodies at 100 days post infection, which persisted in 91% of participants at day 160+. Ongoing symptoms up to six months post infection were present in 50% of study participants with positive PCR and serology results. These data will be important to consider for long-term workforce planning in healthcare as the ongoing pandemic continues. Funding: The CAST study was supported by the Rotunda Hospital and Trinity Biotech.

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From doctors as patients: a manifesto for tackling persisting symptoms of covid-19

Cited by 54 publications

References 6 publications

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

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

Vascular Inflammation as a Therapeutic Target in COVID-19 “Long Haulers”: HIITing the Spot?

Persistence of SARS-CoV-2 antibodies and symptoms in an Irish Healthcare Worker (HCW) setting: Results of the COVID Antibody Staff Testing (CAST) Study

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