Comparing Patient-reported Impact of COVID-19 Shelter-in-place Policies and Access to Containment and Mitigation Strategies Overall and in Vulnerable Populations, United States, 2020-2022 (ICPSR 39218)

Time Period(s) View help for Time Period(s)

Date of Collection View help for Date of Collection

Data Collection Notes View help for Data Collection Notes

Study Purpose View help for Study Purpose

The purpose of the study was to understand the impact of COVID-19 pandemic policies (i.e., shelter-in-place orders, social distances, non-essential business closures) on patient-reported outcomes and on access to containment and mitigation strategies, with the goal to help policymakers reduce harms sustained by the pandemic.

Study Design View help for Study Design

The COVID-19 Citizen Science (CSS) study used a multi-center cohort design with digital engagement of participants - i.e., an "eCohort" study. The CCS study was launched on March 26, 2020 and was hosted on the Eureka research platform, which required participants to be 18 years of age or older, register for a Eureka account, have a smartphone and a cell phone number (a web version of the study was also launched on January 21, 2021), and agree to participate in English. CCS recruited participants globally through press release, word-of-mouth, and partner organizations. The bulk of participants were recruited through U.S. health systems, with invitations delivered to adult patients at the University of California, San Francisco, the University of Utah, Montefiore, New York University, Baylor, Scott and White, Ochsner, and Advocate Aurora Health.

After consenting to the CCS study, participants completed a baseline survey with demographics, medical conditions, medications, behaviors, and past COVID-19 test results. Throughout the study period, participants were prompted to complete daily, weekly, and monthly surveys through the research platform.

Some participants recruited from health systems had the option of authorizing release of electronic health records (EHR) to examine clinical outcomes. Records were queried and extracted from the PCORnet Common Data Model (CDM). Patient-reported outcomes from the CCS were linked to the CDM via a "golden ticket number", which functions as a study ID.

Other data sources for analysis include retrospective COVID-19 policy data from the U.S. COVID-19 County Policy Database (UCCP), COVID-19 death counts from the New York Times, CDC Social Vulnerability Index (SVI) markers, and county-level contextual variables (e.g., GDP, racial group proportions, political leanings, employment, population density, etc.)

Sample View help for Sample

Sample size and enrollment targets were not prespecified for this study. Different subsets of study participants were included for different analyses.

For Research Question 1 (RQ1), analysis was limited to participants who completed the demographics survey, reported their zip code, and submitted at least one anxiety survey (n=56,292 participants), and then further limited to those living in a county where COVID-19 policy data was available from the U.S. COVID-19 County Database (UCCP). In all, 33,756 participants were included in the RQ1 analysis.

For Research Question 2 (RQ2), 96,226 total participants (out of 106,251 consented) reported a zip code that could be linked to a U.S. county to enable a positive deviance analysis, and were considered for inclusion for each of the RQ2 outcome analyses.

Time Method View help for Time Method

Universe View help for Universe

Adults in the United States.

Unit(s) of Observation View help for Unit(s) of Observation

Data Source View help for Data Source

Data Type(s) View help for Data Type(s)

Mode of Data Collection View help for Mode of Data Collection

Description of Variables View help for Description of Variables

• Individual demographics: age, gender, sex, race, Hispanic ethnicity, education level, employment industry (including essential worker indicator) (DS1, DS2)
• Geography: County FIPS code and name, state, region (Census Bureau definition) (DS1, DS2, DS6, DS13, DS14)
• COVID-19 policy and cases items: comprehensiveness indices based on restrictions and closures of public spaces (bars, restaurants, daycare, religious gatherings, etc.), sources of support (food, income, housing, utilities, sick leave, etc.), and public health containment/mitigation efforts (testing, contact tracing, face coverings, vaccinations, etc.); rolling averages of COVID-19 cases per 100,000 (DS1)
• COVID-19 symptoms reports: if respondent experienced symptoms and which symptoms (fever, coughing, runny nose, shortness of breath, inability to taste/smell, muscle aches, sore or scratchy throat, nausea), start date of symptoms (DS3, DS4, DS5)
• COVID-19 testing: if respondent was tested, type of test (active or past infection), how many tests performed (DS3, DS5)
• Vaccinations: if respondent planned to get a COVID-19 vaccine, date of vaccine receipt (DS3, DS6, DS7)
• Pandemic impact and outcome items: General Anxiety Disorder-7 (GAD-7) score; financial anxieties (e.g., difficulty making ends meet); perceived impact on respondent's and respondent's children's physical health, mental/emotional health, social relationships, work/education, and finances; perceived return to "normal" (DS1, DS8)
• Items derived from electronic health records: average number of hospitalizations and healthcare encounters (including telehealth); codes for immunizations, laboratory tests, and procedures (DS9, DS10, DS11, DS12)
• County-level contextual variables: poverty rate, primary care physicians per 100,000 population, gross domestic product (2012 dollars), number of jobs by industry, unemployment rate, average temperature and precipitation levels, racial group proportions, high school graduate proportions, political party affiliation, and COVID-19/healthcare related aggregates (deaths, cases, PCR tests, adult inpatient and ICU beds for COVID-19 patients, vaccinations) (DS13, DS14)

Response Rates View help for Response Rates

Of the 106,514 participants registered for COVID-19 Citizen Science (CCS), 103,251 consented. For the anxiety surveys, 36,711 individuals were included in the dataset and a total of 189,148 responses were received (44.4% of total possible).

Presence of Common Scales View help for Presence of Common Scales

• Adler NE, Epel ES, Castellazzo G, Ickovics JR. Relationship of subjective and objective social status with psychological and physiological functioning: preliminary data in healthy white women. Health Psychol. 2000;19(6):586-92. pmid:11129362.
• Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092-7. Epub 2006/05/24. pmid:16717171.
• Charleson Comorbidity Index (CCI)
• CDC Social Vulnerability Index (SVI)
• MacArthur Scale of Subjective Social Status

Original Release Date View help for Original Release Date

2025-08-05

Version History View help for Version History

Weight View help for Weight

The policies and anxiety dataset (DS1) includes an inverse probability weight variable, IPW, which can be used to examine expected sampling bias. Electronic health record data from the full sampling frame at each participating health system was used to develop the sampling weight.