IMPORTANCEPost-Acute Sequelae of SARS-CoV-2 Infection MESHD
(PASC) is a major public health concern. Studies suggest that 1 in 3 infected with SARS-CoV-2 may develop PASC, including those without initial symptoms or with mild COVID-19 MESHD
OBJECTIVETo evaluate the timing, duration, and health impacts of PASC reported by a large group of primarily non-hospitalized COVID-19 MESHD
DESIGN, SETTING, AND PARTICIPANTSA survey of 5,163 COVID-19 MESHD
survivors reporting symptoms for more than 21 days following SARS-CoV-2 infection MESHD
. Participants were recruited from Survivor Corps and other online COVID-19 MESHD
survivor support groups.
MAIN OUTCOMES AND MEASURESParticipants reported demographic information, as well as the timing, duration, health impacts, and other attributes of PASC. The temporal distribution of symptoms, including average time of onset and duration of symptoms were determined, as well as the perceived distress and impact on ability to work.
RESULTSOn average, participants reported 21.4 symptoms and the number of symptoms ranged from 1 to 93. The most common symptoms were fatigue MESHD
(79.0%), headache MESHD
(55.3%), shortness of breath MESHD
(55.3%), difficulty concentrating (53.6%), cough MESHD
(49.0%), changed sense of taste (44.9%), diarrhea MESHD
(43.9%), and muscle or body aches (43.5%). The timing of symptom onset varied and was 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 MESHD
(101.7), difficulty concentrating (101.1), memory problems (100.8), sadness (99.2), hormone imbalance (99.1), and shortness of breath MESHD
(96.9). The symptoms that affected ability to work included the relapsing/remitting nature of illness (described by survivors as "changing symptoms"), inability to concentrate, fatigue MESHD
, and memory problems MESHD
, 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 MESHD
(4.3), sharp or sudden chest pain MESHD
(4.2), brain pressure (4.2), headache MESHD
(4.2), persistent chest pain MESHD
or pressure (4.1), and bone pain MESHD
in extremities (4.1).
CONCLUSIONS AND RELEVANCEPASC is an emerging public health priority characterized by a wide range of changing symptoms, which hinder 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 management strategies best meet the needs of individual patients and help mitigate health impacts of this new disease.