Background
Many patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms for months following the initial phase of the infection, often referred to as “Long COVID.” Symptoms include fatigue, shortness of breath and cognitive dysfunction, which may impact daily functioning. The true incidence and comprehensive characteristics of Long COVID symptoms are currently unknown. This is the first population-based outreach study of Long COVID symptoms in patients within an entire health system, conducted to determine operational needs of the health system to care for patients with Long COVID at our multidisciplinary Post-COVID Care Clinic and in the primary care setting.
Methods
We conducted a survey of patients in our electronic health record (EHR) via email or SMS message who met these inclusion criteria: age 18 years or older, tested positive for COVID-19 at UCSDH between March 1, 2020 and July 1, 2021, and not deceased. Our survey identified patients experiencing symptoms consistent with Long COVID, and characterized the nature and severity of these symptoms and their impact on daily functioning. Rates of Long COVID symptoms were tabulated from patient responses and aligned with demographics from EHR.
Results
The survey was sent to 9,619 patients and achieved a 10.4% response rate. The average age of respondents was 51.5 years (range: 18 – 89 years), and 525 (53%) identified as White, 229 (23%) as Other Race or Mixed Race, 91 (9%) as Asian, 44 (4%) as Black or African American, five (0.5%) as American Indian or Alaska Native, 5 (0.5%) as Native Hawaiian or Other Pacific Islander, and 100 (10%) were unknown. Of the 999 respondents, almost half (46.3%) replied “yes” or “maybe” to currently having symptoms believed to be caused by having COVID-19. The breakdown of symptoms is depicted in Figure 1, with weakness/tiredness (77.8%), sleep disturbances (67.2%), and difficulty thinking/concentrating (“brain fog”) (64.3%) reported most frequently. Of those experiencing chronic symptoms, 343 (83.9%) had at least three symptoms, with a mean, median and mode of six symptoms (range: 0 – 16). 75/216 (34.7%) of patients reported absences from work/school due to symptoms, 143/216 (66.2%) reported disruption of daily activities, but only 123 reported seeking medical care. 130 (14.8%) reported being hospitalized due to COVID-19, and 74 (8.4%) reported being treated with monoclonal antibodies for COVID-19. 21.7% and 22.6% of respondents screened positive (score of 3+) on the PHQ-2 depression and GAD-2 anxiety screening tools.
Conclusion
To our knowledge, this represents the first population-based study of Long COVID symptoms in this spectrum of patients within a health system, particularly as most were not hospitalized for COVID-19 (>85% of respondents). The results demonstrate that patients experiencing Long COVID symptoms have a significant impact on their daily functioning and mental health, with about 1/3 reporting absenteeism and 2/3 reporting daily impact on functioning, and ¼ screening positive for depression and anxiety, which has major implications for population-based screening for post-COVID morbidity. Large population-based surveys like ours can be utilized across health systems to better triage patients with Long COVID who may need closer follow-up care.