long covid case definition – American ME and CFS Society

The spectrum of signs and symptoms that can newly occur and persist for months to years after SARS-CoV-2 infection was initially named long COVID. This term was collectively created by the patient community in the spring of 2020,1 and was later followed by other terms, such as post-COVID-19 condition, post-acute sequelae of SARS-CoV-2 infection, and post-COVID syndrome.2 This condition can affect different organs and body systems, with a wide range of signs and symptoms reported. Given the magnitude of the sequelae of SARS-CoV-2 infection, it is essential to agree upon the nomenclature and definition to assess its incidence, subtypes, and severity. This process cannot be left to agencies, health-care providers, or researchers alone, but requires extensive consultation, notably including the people affected.

In early 2021, WHO established technical working groups to provide a clinical case definition for this condition and amplified the calls of patient groups for recognition, research, and rehabilitation. A rapidly increasing number of studies started to investigate the incidence and prevalence, features, and risk factors of the prolonged sequelae of SARS-CoV-2 infection, the underlying mechanisms, and case management approaches.3

There are concerns about differences in terminology, with some public health experts and policy makers avoiding the term long COVID. The use of different terms can raise worries, especially among those with lived experience of the condition who originally coined the term long COVID. Many issues have been raised by patient-researchers and other adopters of the term. One issue is epistemic injustice in medicine, including the poor recognition of patient-led expertise. Patient perspectives emphasise the tradition in medical history that those who first identify and describe a condition, name it. In the case of long COVID, it was people with lived experience of it who brought it to the world’s attention and described it via a wide range of methods. The first publication on prolonged symptoms of COVID-19 was authored by patient-researchers with long COVID, later known as the Patient-Led Research Collaborative.4 Another issue is that the severity, features, and urgency of long COVID—as highlighted by patients—are not fully addressed within the framework of other terms and definitions. Long COVID remains the patient-preferred term.1

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Source: Munblit D, O’Hara ME, Akrami A, Perego E, Olliaro P, Needham DM. Long COVID: aiming for a consensus [published online ahead of print, 2022 May 4]. Lancet Respir Med. 2022;S2213-2600(22)00135-7. doi:10.1016/S2213-2600(22)00135-7 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9067938/ (Full text)

Abstract:

Objective: The aim of this study was to derive a research definition for ‘Long COVID (post-COVID-19 condition)’ in children and young people (CYP) to allow comparisons between research studies.

Design: A three-phase online Delphi process was used, followed by a consensus meeting. Participants were presented with 49 statements in each phase and scored them from 1 to 9 based on how important they were for inclusion in the research definition of Long COVID in CYP. The consensus meeting was held to achieve representation across the stakeholder groups. Statements agreed at the consensus meeting were reviewed by participants in the Patient and Public Involvement (PPI) Research Advisory Group.

Setting: The study was conducted remotely using online surveys and a virtual consensus meeting.

Participants: 120 people with relevant expertise were divided into three panels according to their area of expertise: Service Delivery, Research (or combination of research and service delivery) and Lived Experience. The PPI Research Advisory group consisted of CYP aged 11-17 years.

Main outcome measures: Consensus was defined using existing guidelines. If consensus was achieved in two or more panels or was on the border between one and two panels, those statements were discussed and voted on at the consensus meeting.

Results: Ten statements were taken forward for discussion in the consensus meeting and five statements met threshold to be included in the research definition of Long COVID among CYP. The research definition, aligned to the clinical case definition of the WHO, is proposed as follows: Post-COVID-19 condition occurs in young people with a history of confirmed SARS-CoV-2 infection, with at least one persisting physical symptom for a minimum duration of 12 weeks after initial testing that cannot be explained by an alternative diagnosis. The symptoms have an impact on everyday functioning, may continue or develop after COVID infection, and may fluctuate or relapse over time. The positive COVID-19 test referred to in this definition can be a lateral flow antigen test, a PCR test or an antibody test.

Conclusions: This is the first research definition of Long COVID (post-COVID-19 condition) in CYP and complements the clinical case definition in adults proposed by the WHO.

Source: Stephenson T, Allin B, Nugawela MD, Rojas N, Dalrymple E, Pinto Pereira S, Soni M, Knight M, Cheung EY, Heyman I; CLoCk Consortium, Shafran R. Long COVID (post-COVID-19 condition) in children: a modified Delphi process. Arch Dis Child. 2022 Apr 1:archdischild-2021-323624. doi: 10.1136/archdischild-2021-323624. Epub ahead of print. PMID: 35365499; PMCID: PMC8983414. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8983414/ (Full text)