COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection

Abstract

IMPORTANCE: Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) is a major public health concern since studies suggest that 1 in 3 infected with SARS-CoV-2 may develop PASC, including those without initial symptoms or with mild COVID-19 disease.1, 2 OBJECTIVE: To evaluate the timing, duration, and health impacts of PASC reported by a large group of primarily non-hospitalized COVID-19 survivors. DESIGN, SETTING, AND PARTICIPANTS: A survey of 5,163 COVID-19 survivors reporting symptoms for more than 21 days following SARS-CoV-2 infection. Participants were recruited from Survivor Corps and other online COVID-19 survivor support groups. MAIN OUTCOMES AND MEASURES: Participants reported demographic information, as well as the timing, duration, health impacts, and other attributes of PASC. The temporal distribution of symptoms, including average time to symptom onset and duration of symptoms were determined, as well as the perceived distress and impact on ability to work. RESULTS: On average, participants reported 21.4 symptoms and the number of symptoms ranged from 1 to 93. The most common symptoms were fatigue (79.0%), headache (55.3%), shortness of breath (55.3%), difficulty concentrating (53.6%), cough (49.0%), changed sense of taste (44.9%), diarrhea (43.9%), and muscle or body aches (43.5%). The timing of symptom onset varied and is best described as happening in waves. The longest lasting symptoms on average for all participants (in days) were "frequently changing" symptoms (112.0), inability to exercise (106.5), fatigue (101.7), difficulty concentrating (101.1), memory problems (100.8), sadness (99.2), hormone imbalance (99.1), and shortness of breath (96.9). The symptoms that affected ability to work were changing symptoms, inability to concentrate, fatigue, and memory problems, among others. Symptoms causing the greatest level of distress (on scale of 1 "none" to 5 "a great deal") were extreme pressure at the base of the head (4.4), syncope (4.3), sharp or sudden chest pain (4.2), brain pressure (4.2), headache (4.2), persistent chest pain or pressure (4.1), and bone pain in extremities (4.1). CONCLUSIONS AND RELEVANCE: PASC is an emerging public health priority characterized by a wide range of changing symptoms and hindering survivors' ability to work. PASC has not been fully characterized and the trajectory of symptoms and long-term outcomes are unknown. There is no treatment for PASC, and survivors report distress in addition to a host of ongoing symptoms. Capturing patient reports of symptoms through open-ended inquiry is a critical first step in accurately and comprehensively characterizing PASC to ensure that medical treatments and symptom management strategies best meet the needs of patients and help mitigate health impacts of this new disease.

Central Sensitization Phenotypes in Post Acute Sequelae of SARS-CoV-2 Infection (PASC): Defining the Post COVID Syndrome

“… 6 One of the largest symptom reports comes from an online community of COVID-19 patients experiencing post-infectious symptoms, Survivor Corps. 7 This report again identified fatigue, pain, and dyspnea as predominant symptoms, but also introduced several previously unreported symptoms including difficulty concentrating or focusing, difficulty sleeping, and exercise intolerance. This symptom constellation was also confirmed by clinicians from a large public health system in France.…”

“…However, given the similarities in patient symptomatology and outcomes between our sample and that portrayed in previous literature, the syndrome description appears appropriate. 5 - 7 , 9 , 38 …”

“…Based on our current knowledge, PoCoS can affect adults of any age and disease severity with variable penetrance. 5 - 7 , 9 , 38 This implies that there are intrinsic patient factors that may play a role in pathogenesis of this syndrome. Patients who were asymptomatic in their acute exposure or those who demonstrated evidence of central sensitization syndromes prior to infection were notably excluded from this set of criteria in order to reduce confounding variables; however, we now know that asymptomatic patients may develop secondary symptoms, 9 and it is certainly a possibility that individuals with preexisting central sensitization may have new or worsening symptoms following infection with COVID-19.…”

How an effective response to post‐acute sequelae of SARS‐CoV‐2 infection (PASC) relies on nursing research

“…PASC manifests as a constellation of symptoms, varying from patient to patient. In Fall 2020, our team identified over 100 patient-reported symptoms of PASC, including debilitating symptoms like fatigue, "brain fog," and alterations in mood that cause profound distress and functional impairment (Lambert & Survivor, 2020;Lambert et al, 2021). Additionally, we identified five symptom clusters associated with long-haul and noted a prevalence rate of 11% in nonhospitalized patients 6 months after a polymerase chain reaction (PCR) confirmed SARS-CoV-2 infection (Huang et al, 2021).…”

“…And nearly one-third of longhaulers were asymptomatic at the time of receiving a positive PCR test (Huang et al, 2021). PASC affects all demographics, independent of initial symptom severity, and preliminary analysis of patient-reported symptoms suggests variable onset thereof (Lambert et al, 2021). Because PASC has no cure, symptom management is currently the gold standard.…”