Reports of Forgone Medical Care Among US Adults During the Initial Phase of the COVID-19 Pandemic

Key Points Question What are the frequency of and reasons for reported forgone medical care from March to mid-July 2020, the initial phase of the coronavirus disease 2019 (COVID-19) pandemic in the US? Findings In this national survey of 1337 participants, 41% of respondents reported forgoing medical care from March through mid-July 2020. Among adults who reported needing care during this period, more than half reported forgoing care for any reason, more than one-quarter reported forgoing care owing to fear of severe acute respiratory syndrome coronavirus 2 transmission, and 7% reported forgoing care owing to financial concerns. Meaning This survey study found that there was a high frequency of forgone care from March to mid-July 2020, with respondents commonly attributing the causes of forgone care to repercussions of the COVID-19 pandemic.


Introduction
During the initial months of the coronavirus disease 2019 (COVID-19) pandemic, the US health care system experienced major disruptions, with temporary closures of medical practices, cancellation of elective procedures, and the shift of many services to telehealth delivery. 1These disruptions may have led individuals to forgo medical care.Forgoing care for chronic and emergent conditions can lead to increased complications and costs.Additionally, missing preventive care, such as cancer screenings, can result in a delayed diagnosis.Since the pandemic onset, hospitals have reported substantial declines in emergency department (ED) visits for severe health issues, including heart attacks and strokes. 2 Several factors may have influenced individuals' decisions to forgo medical care during the COVID-19 pandemic.In March 2020, many state and local governments issued emergency public health orders, such as stay-at-home orders and bans on elective procedures, which either discouraged or prohibited certain types of medical care. 1 These suspensions were not lifted until late spring or early summer 2020.Furthermore, many medical practices voluntarily closed in the early weeks of the pandemic, either to redirect their personnel to COVID-19 response or to reduce risk of transmission of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that causes COVID-19.Many individuals feared that seeking in-person medical care could expose them to SARS-CoV-2.
In addition, the financial downturn caused by the COVID-19 pandemic increased unemployment rates and reduced employee working hours.In the first 4 months of the pandemic, more than 48 million individuals filed for unemployment benefits. 3Because health insurance is tied to employment for many US adults, layoffs have also resulted in more than 12 million individuals losing coverage since March 2020. 4Resulting financial concerns may have influenced individuals' decisions to obtain or forgo care.
Several studies have sought to quantify changes in medical care during the pandemic using electronic health record (EHR) or insurance claims data.A study by Westgard et al 5 found a 49% decline in ED visits comparing visits in the 28 days before and 28 days after the state emergency declaration using EHR data from an urban trauma center. 5Using data from 9 cardiac catheterization laboratories, a study by Garcia et al 6 estimated a 38% decline in cardiac catheterizations, comparing data from March 2020 with data from 2019 and earlier in 2020.Similarly, a study by Bhatt et al 7 estimated a 43% reduction in hospitalizations for cardiovascular conditions in March 2020 compared with March 2019, using data from a large health system.While these studies provide a useful snapshot of changes in health care utilization, they do not provide a nationally representative picture of forgone care or assess the mechanisms behind reductions in care.Understanding reasons individuals forgo care is particularly important for designing clinical and policy interventions targeted to barriers to obtaining care.Furthermore, these prior studies focused on care for severe health issues and did not examine preventive care, mental health care, or prescription medication continuity.
To our knowledge, no published research has quantified the frequency of and factors associated with forgone medical care during the initial phase of the COVID-19 pandemic in a representative sample of US adults.We fielded a nationally representative survey to determine the frequency and types of forgone medical care among adults and the reasons identified for cancelling or not seeking care from March through mid-July 2020.We examined the sociodemographic characteristics of JAMA Network Open | Health Policy respondents forgoing medical care and assessed whether prevalence differed for certain at-risk groups, including individuals who were unemployed, lacked health insurance, or had chronic health conditions.Finally, we examined 2 specific reasons respondents may have forgone medical care: fear of exposure to SARS-CoV-2 and the financial repercussions of the COVID-19 pandemic.

Methods
All data reported in this survey study come from wave 2 of the Johns Hopkins COVID-19 Civic Life and Public Health Survey, fielded July 7 to 22, 2020, using the National Opinion Research Center's (NORC) AmeriSpeak Panel.Prior to enrolling individuals in the AmeriSpeak Panel, NORC obtained written informed consent.This study was approved by the Johns Hopkins Bloomberg School of Public Health institutional review board.This study is reported following the American Association for Public Opinion Research (AAPOR) reporting guideline.
The AmeriSpeak Panel is a probability-based panel designed to be representative of the US adult population.The panel is drawn from NORC's area probability sample and US Postal Service addresses and covers 97% of US households. 8The AmeriSpeak panel's recruitment rate is 34% and includes approximately 35 000 individuals.Our sample was drawn from this panel, and respondents completed the survey online.
We developed a 16-item module to assess health status and forgone medical care from March to the time of survey data collection in July 2020 (eAppendix in the Supplement).Possible types of forgone medical care included missed prescription medications, missed scheduled preventive care visits, missed scheduled general medical outpatient visits (ie, physical health care, other than preventive care, delivered in an office setting), missed scheduled mental health outpatient visits, missed elective surgical procedures, or emergent health issues warranting general medical or mental health care for which the respondent did not receive care.In the survey, we asked respondents to distinguish between care received through telehealth (not classified as forgone care) and missed or forgone care.We defined a new health issue as severe if a respondent reported a severity score of 4 or 5 on a 5-point Likert scale.In addition to the aggregate measure that included all of the categories of forgone care, we also developed a measure of forgone planned medical care that included prescription medications, scheduled preventive care visits, scheduled general medical outpatient visits, scheduled mental health outpatient visits, and elective surgical procedures but did not include new health issues.
We calculated prevalence of forgone medical care overall and by type of care among all respondents and among the subset who reported needing care.Then, among individuals who reported needing care, we calculated prevalence of forgone medical care by sociodemographic and clinical characteristics and tested whether group differences were statistically significant.0][11] We classified individual race/ethnicity based on self-reported race/ethnicity using response options defined by NORC.Finally, we tested whether frequency of forgone medical care differed by employment and health insurance status.

Statistical Analysis
All counts and percentages reported in this study are survey weighted To test whether frequency of forgone medical care differed between subgroups, we used Pearson χ 2 tests.We considered a difference to be statistically significant if the 2-sided P value was less than .05.We conducted analyses in Stata statistical software version 16 (StataCorp), applying survey weights to calculate nationally representative estimates.Data were analyzed from July 30 to September 3, 2020.
A total of 544 respondents, representing an estimated 41% of US adults , reported forgoing medical care during the initial phase of the COVID-19 pandemic in the US from March through mid-July 2020 (Figure 1), including 108 respondents (8%) who reported missing 1 or more doses of a prescription medicine typically picked up from a retail pharmacy, 387 respondents (29%) who reported missing a preventive care visit, 343 respondents (26%) who reported missing an outpatient general medical appointment, 105 respondents (8%) who reported missing an outpatient mental health appointment, 77 respondents (6%) who reported missing an elective surgery, and 38 respondents (3%) who reported not receiving health care for a new severe mental or physical health issue.
Among 1055 respondents (79%) who reported needing care from March to mid-July 2020, 544 (52%) reported forgoing care, including 108 of 725 respondents (15%) who typically picked up prescription medication and who missed 1 or more doses, 387 of 664 respondents (58%) with scheduled preventive care, 343 of 688 respondents (50%) with scheduled general medical care, and 105 of 227 respondents (46%) with scheduled mental health care reporting missing visits.Among 127 respondents who had scheduled an elective surgical procedure in the initial phase of the pandemic, 77 respondents (60%) reported forgoing their surgical procedure.Finally, 38 of 74 respondents (51%) with a severe mental or physical health issue that emerged after the start of the pandemic reported forgoing care.
Among 535 respondents who reported missing any planned medical care, including missed prescription medications or missed scheduled appointments or procedures, 337 (63%) attributed missed care to a medical practice being closed (either temporarily or permanently), 307 (57%) attributed missed care to fear of SARS-CoV-2 exposure, and 75 (7%) attributed missed care to financial repercussions of the COVID-19 pandemic (Figure 2).While medical practice closure was the most common reason for missing care, 174 respondents (56%) who reported missing care owing to Respondents who were unemployed or not working owing to disability, compared with individuals who were employed, reported higher frequency of any forgone medical care (121 0f 186

Financial repercussions of COVID-19 pandemic
Respondents were prompted to select the reasons that best described why they missed taking a dose(s) of medication or missed a previously scheduled health care appointment.Respondents were allowed to select more than 1 reason.Practitioner practice being closed was not a response option for individuals who reported missing a dose of prescription medication.COVID-19 indicates coronavirus disease 2019; SARS-CoV-2, severe acute respiratory syndrome coronavirus 2. Frequency of forgone medical care varied by self-reported health status, number of prescription medications taken, and presence of a mental health condition (Table 2).Respondents who rated their health as fair or poor more often reported missing prescription medication compared with individuals who rated their health as excellent (35 of  P = .03).We also examined whether there were differences in reporting forgoing care owing to practice closures, but did not find statistically significant differences based on employment status or insurance coverage.

Figure 2 .
Figure 2. Reasons Reported for Forgoing Care Among Respondents Who Missed Planned Care From March Through Mid-July 2020 Figure 1.Share of Respondents Forgoing Medical Care From March Through Mid-July 2020 [12%]; P = .01).

Table 1 .
Respondents Who Reported Needing Care Reporting Forgone Medical Care From March Through Mid-July 2020, by Sociodemographic Characteristics frequency of forgone medical care by other chronic health conditions examined, including heart disease, lung disease, or high blood pressure, diabetes, or high cholesterol.We identified differences in the reasons stated for forgoing medical care by employment and health insurance status (Figure3).Compared with adults who were employed, adults who were unemployed more often attributed forgone medical care to fear of SARS-CoV-2 exposure (78 of 186 reported

Table 2 .
Share of Respondents Who Reported Needing Care Who Reported Forgone Medical Care From March Through Mid-July 2020, by Clinical Characteristics Forgone medical care includes missing 1 or more doses of a medicine the respondent typically picked-up or had someone else pick up from a retail pharmacy; missing a scheduled health care visit, including a preventive care visit, general medical outpatient visit, mental health outpatient visit, or elective surgical procedure; or not receiving care for a new severe (defined based on self report as severity 4-5 on a scale of 1-5) physical or mental health issue.Individuals could report multiple types of forgone care.
a b Scheduled medical care includes scheduled preventive care visits, scheduled general medical outpatient visits, scheduled mental health outpatient visits, and elective surgical procedures.