Challenges in defining Long COVID: Striking differences across literature, Electronic Health Records, and patient-reported information

Rando, Halie M.; Bennett, Tellen D.; Byrd, James Brian; Bramante, Carolyn; Callahan, Tiffany J.; Chute, Christopher G; Davis, Hannah; Deer, Rachel; Gagnier, Joel; Koraishy, Farrukh M.; Liu, Feifan; McMurry, Julie A.; Moffitt, Richard A.; Pfaff, Emily R.; Reese, Justin; Relevo, Rose; Robinson, Peter N.; Saltz, Joel; Solomonides, Anthony; Sule, Anupam A; Topaloğlu, Ümit; Haendel, Melissa

doi:10.1101/2021.03.20.21253896

Cited by 101 publications

(109 citation statements)

References 185 publications

(236 reference statements)

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“…A broad range of symptoms can last over 6 months, and can include persistence of initial acute symptoms or development of new symptoms [3,8,9]. Persistent or new symptoms affecting COVID-19 survivors are named post-acute sequelae of COVID-19 (PASC) [9,10]. Risk factors for developing PASC are currently being defined globally.…”

Section: Introductionmentioning

confidence: 99%

A longitudinal SARS-CoV-2 biorepository for COVID-19 survivors with and without post-acute sequelae

et al. 2021

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Background SARS-CoV-2 has swept across the globe, causing millions of deaths worldwide. Though most survive, many experience symptoms of COVID-19 for months after acute infection. Successful prevention and treatment of acute COVID-19 infection and its associated sequelae is dependent on in-depth knowledge of viral pathology across the spectrum of patient phenotypes and physiologic responses. Longitudinal biobanking provides a valuable resource of clinically integrated, easily accessed, and quality-controlled samples for researchers to study differential multi-organ system responses to SARS-CoV-2 infection, post-acute sequelae of COVID-19 (PASC), and vaccination. Methods Adults with a history of a positive SARS-CoV-2 nasopharyngeal PCR are actively recruited from the community or hospital settings to enroll in the Northern Colorado SARS-CoV-2 Biorepository (NoCo-COBIO). Blood, saliva, stool, nasopharyngeal specimens, and extensive clinical and demographic data are collected at 4 time points over 6 months. Patients are assessed for PASC during longitudinal follow-up by physician led symptom questionnaires and physical exams. This clinical trial registration is NCT04603677. Results We have enrolled and collected samples from 119 adults since July 2020, with 66% follow-up rate. Forty-nine percent of participants assessed with a symptom surveillance questionnaire (N = 37 of 75) had PASC at any time during follow-up (up to 8 months post infection). Ninety-three percent of hospitalized participants developed PASC, while 23% of those not requiring hospitalization developed PASC. At 90–174 days post SARS-CoV-2 diagnosis, 67% of all participants had persistent symptoms (N = 37 of 55), and 85% percent of participants who required hospitalization during initial infection (N = 20) still had symptoms. The most common symptoms reported after 15 days of infection were fatigue, loss of smell, loss of taste, exercise intolerance, and cognitive dysfunction. Conclusions Patients who were hospitalized for COVID-19 were significantly more likely to have PASC than those not requiring hospitalization, however 23% of patients who were not hospitalized also developed PASC. This patient-matched, multi-matrix, longitudinal biorepository from COVID-19 survivors with and without PASC will allow for current and future research to better understand the pathophysiology of disease and to identify targeted interventions to reduce risk for PASC. Registered 27 October 2020 - Retrospectively registered, https://clinicaltrials.gov/ct2/show/NCT04603677.

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Section: Introductionmentioning

confidence: 99%

A longitudinal SARS-CoV-2 biorepository for COVID-19 survivors with and without post-acute sequelae

et al. 2021

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“…Healthcare professionals who are living with long COVID describe its trajectory as unpredictable, episodic and having a relapse-remitting nature [12][13][14]. Reports of persistent fatigue alongside fluctuating symptoms that worsen unpredictably or in response to exertion have led to comparisons between long COVID and other post-viral conditions, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [5,6,[15][16][17]. One of the hallmark symptoms of ME/CFS is post-exertional symptom exacerbation, also called post-exertional malaise (PEM) [18,19].…”

Section: Introductionmentioning

confidence: 99%

Chronic fatigue and post-exertional malaise in people living with long COVID

Twomey

DeMars²,

Franklin

et al. 2021

Preprint

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Purpose: People living with long COVID describe a high symptom burden, and a more detailed assessment of chronic fatigue and post-exertional malaise (PEM) may inform the development of rehabilitation recommendations. The aims of this study were to use validated questionnaires to measure the severity of fatigue and compare this with normative data and thresholds for clinical relevance in other diseases; measure and describe the impact of PEM; and describe symptoms of dysfunctional breathing, self-reported physical activity/sitting time, and health-related quality of life. Methods: This was an observational study involving an online survey for adults living with long COVID (data collection from February-April, 2021) following a confirmed or suspected SARS-CoV-2 infection. Questionnaires included the Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and DePaul Symptom Questionnaire-Post-Exertional Malaise. Results: After data cleaning, n=213 participants were included in the analysis. Participants primarily identified as women (85.5%), aged 40-59 (78.4%), who had been experiencing long COVID symptoms for ≥6 months (72.3%). The total FACIT-F score was 18±10 (where the score can range from 0-52, and a lower score indicates more severe fatigue), and 71.4% were experiencing chronic fatigue. Post-exertional symptom exacerbation affected most participants, and 58.7% met the scoring thresholds used in people living with myalgic encephalomyelitis/chronic fatigue syndrome. PEM occurred alongside a reduced capacity to work, be physically active, and function both physically and socially. Conclusion: Long COVID is characterized by chronic fatigue that is clinically relevant and is at least as severe as fatigue in several other clinical conditions, including cancer. PEM appears to be a common and significant challenge for the majority of this patient group. Patients, researchers, and allied health professionals are seeking information on safe rehabilitation for people living with long COVID, particularly regarding exercise. Fatigue and post-exertional symptom exacerbation must be monitored and reported in studies involving interventions for people with long COVID.

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“…The importance of the topic is further underscored by the fact that recent literature introduced the term “Long COVID” in order to describe people recovered from COVID-19, but still having lasting symptoms, such as fatigue, muscle weakness, sleep difficulties, anxiety or depression ( 21 , 31 ). It has been suggested that scientific studies must better identify the heterogeneity of Long COVID, considering that it might represent another public health crisis ( 32 ).…”

Section: Introductionmentioning

confidence: 99%

Mid-term Psychiatric Outcomes of Patients Recovered From COVID-19 From an Italian Cohort of Hospitalized Patients

et al. 2021

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Background: Although the usual primary clinical manifestation of Coronavirus disease (COVID-19) is respiratory, several non-respiratory symptoms have been described, including neuropsychiatric ones. The aim of this study was to investigate the mid-term mental health outcomes in patients recovered from COVID-19, 3–4 months after discharge from the University Hospital Maggiore della Carità, Novara, Italy. Furthermore, we investigated the possible association of the mid-term mental health consequences of the COVID-19 infection with patients' clinical current status, persistent physical impairment and severity of acute phase of the disease.Methods: Prospective study involving 238 individuals recovered from COVID-19. In the context of a multi-disciplinary approach, patients' assessment included both a clinical interview performed by an experienced psychiatrist, trained in the use of the Mini-International Neuropsychiatric Interview to assess the presence of anxiety and depressive symptoms and self-administered questionnaires: Beck Anxiety Inventory (BAI), Beck Depression Inventory-II (BDI-II), Resilience Scale for Adults (RSA), Impact of Event Scale (IES).Results: At the psychiatric assessment 32.9 and 29.5% of participants showed anxiety and depressive symptoms, respectively. Changes in appetite and sleep patterns emerged for 15.6 and 31.2% of patients. According to the self-administered questionnaires, 7.1% of participants had moderate-severe anxiety levels (BAI), while 10.5% had mild to severe depression (BDI-II). Twenty-six (11%) participants were referred to further psychiatric consultation. Psychiatric symptoms showed no correlation with acute COVID-19 severity; in our sample patients with depressive symptoms at the clinical interview, as well as those with mild to severe levels of depression according to BDI-II scores, had lower forced expiratory volume in the 1st second (FEV1) values than those without and greater odds for persistent, poor tolerance for physical efforts.Conclusions: As could be expected, an approach including both a psychiatric interview and the use of self-administered questionnaires is likely to capture the psychiatric outcome of patients recovered from COVID-19 better than questionnaires alone. Anxiety and depressive symptoms at follow-up had no correlation with the severity of COVID acute manifestations, but rather with ongoing and persistent physical symptoms. Further studies and longer follow-up duration will allow a better understanding of the complex relationship between residual physical symptoms, quality of life and psychological health.

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Challenges in defining Long COVID: Striking differences across literature, Electronic Health Records, and patient-reported information

Cited by 101 publications

References 185 publications

A longitudinal SARS-CoV-2 biorepository for COVID-19 survivors with and without post-acute sequelae

A longitudinal SARS-CoV-2 biorepository for COVID-19 survivors with and without post-acute sequelae

Chronic fatigue and post-exertional malaise in people living with long COVID

Mid-term Psychiatric Outcomes of Patients Recovered From COVID-19 From an Italian Cohort of Hospitalized Patients

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