How is the Pandemic Changing Us?

Since April 2020, a research team at CUNY SPH has checked in regularly with nearly 7,000 people from all 50 U.S states, the District of Columbia, Puerto Rico, and Guam, to find out exactly how Covid-19 is impacting their lives.

With $3 million in emergency funding from the National Institutes of Health, the Communities, Households, and SARS-COV-2 Epidemiology (CHASING) COVID Cohort study is one of just a small number of prospective cohort studies—an estimated 18 worldwide, three of them in the United States—investigating how a broad population is experiencing the pandemic over an extended period of time.

“A lot of studies that are being done around SARS-CoV-2 focus mainly on people infected, diagnosed, or hospitalized,” says study principal investigator Denis Nash, PhD, distinguished professor and founding executive director of the CUNY Institute for Implementation Science in Population Health (ISPH). “For our study, the only criteria are being 18 or over and living in U.S.”

ISPH has conducted longitudinal cohort studies for years, mostly looking at the uptake of HIV treatment and prevention therapies and strategies. They began to think about potential research as New York City went into lockdown when they experienced a Covid-19 outbreak among members of their own team.

Concerned about the virus’ potential impact well beyond NYC, “We asked as we were all sitting at home in quarantine, what is it that we can uniquely contribute?” says Dr. Nash. “We launched as soon as anybody could reasonably design and launch a cohort study.”

“It was an opportunity to be a part of addressing something impacting the entire world in real-time,” says Sarah Kulkarni, MPH, associate director of ISPH. “At a time when so much had been taken away and everyone’s life changed overnight, it gave me a sense of purpose and feeling of making a contribution.”

Along with collecting antibody specimens from participants to determine whether they’ve had Covid-19, the study team routinely asks about everything from anxiety and depression; race/ethnicity, economic situation, and even what kind of dwelling people live in; whether during the pandemic they have taken an airplane, dined indoors, or not worn a mask, as well as how well they trust the vaccination process and preferences for Covid-19 testing.

By gathering such comprehensive information, the hope is that the CHASING COVID Cohort Study will not only illuminate the collective experience of this unprecedented time, but provide insights into many of the pandemic’s most pressing questions: What behaviors put people most at risk of getting infected? Who is most at risk? How has the pandemic and related economic disruption impacted mental health? How closely are people adhering to public health guidelines? How trusted is the vaccination process? Do people who said they were hesitant to be vaccinated get vaccinated anyway?

“I hope that this study can help to document how the pandemic impacted multiple dimensions of the lives of people in this country,” says Dr. Nash. “Not only the infection but other outcomes—like the mental health toll on many people and communities, and the impact on employment, economic outcomes and life stressors like food and housing security—which we know are greatly affecting people’s daily health and well-being.”

Covid-19’s unequal impact

Like other studies, CHASING COVID’s data highlights the racial disparities of the pandemic. The study has been testing patients for Covid-19 antibodies around every six months. In the first round of tests, between May and August, 3,280 people tested negative for antibodies. In the second round, between November 2020 and January 2021, 145 people became newly infected. Among them, Hispanic and Black participants were twice as likely to have become infected as non-Hispanic Whites.

The results also point to economic inequality of who’s infected. Those who live in apartments with four or more people—which could indicate household overcrowding—were more likely to contract Covid-19 and be hospitalized than other groups.

“If you have four people in your house, but you live in a five-bedroom house, it might not be so bad, but if you have four people in your house and you live in a two-bedroom apartment, that could be different,” says Dr. Nash.

Living with children also put one at greater risk of hospitalization with Covid-19, which raises questions about whether children pass on the virus more than is believed.

“There has been in my view this kind of a magical thinking that somehow kids don’t contribute to transmission,” says Dr. Nash. “They do likely contribute to transmission—they may not contribute the same that adults do.”

It’s possible to keep open schools and other places where children gather safely, as long as the potential risks are understood and precautions are taken, says Dr. Nash.

“Even if [transmission at schools] is low, it’s not inconsistent with the idea that a child’s infection at home where masks are likely not worn could result in a more severe outcome among the parents or other household members,” Dr. Nash says.

How risky are indoor dining, airplanes, and more?

One of the universal challenges of Covid-19 has been navigating its grey areas—the behavior that isn’t restricted, like grocery shopping or airplane travel, but that could still put us at risk of infection. CHASING COVID is uniquely positioned to illuminate this information because of its longitudinal design.

“We’re looking at how risk changes and evolves over time and how behaviors change that drive risk,” he says. “We can compare something no other study in U.S. has so far, which is to look at what are risk factors of people going from being negative to positive over time.”

CHASING COVID is seeking to better understand risk through asking participants about their behaviors over the pandemic period. So far, the data shows that people who became infected are more likely to have engaged in either: dining indoors, visiting a place of worship, traveling by airplane, or wearing masks inconsistently—such as not always wearing them to the grocery store, or while visiting friends or family.

Even more troubling, of those who tested positive for the virus, only 31 percent reported isolating. These results don’t necessarily mean people knowingly went out while infected, Dr. Nash says. They could have been asymptomatic, or not gotten a test until their illness passed.

What’s troubling, he says, is when people don’t know they’re infected, they’re more likely to spread the virus further. And this could point to why community spread has been so rampant in the U.S. Dr. Nash says these results show the problems with a government response that hasn’t included enough testing and isolating, and points to where resources should be directed. “I think our data suggest that this virus is too quick and too quiet for community transmission to be controlled by contact tracing. We need other strategies, and vaccination is a big one,” he says.

The importance of testing, even after vaccination

With the possibility that Covid-19 mutations could render vaccines at least temporarily ineffective, and until everyone can be vaccinated, testing will remain an important part of controlling the virus as society opens back up, according to Dr. Nash. This means making it as easy as possible for people to get tested, he says, and understanding what might hold them back.

“If people aren’t getting tested enough, it becomes an important public health question to ask: ‘How do we get people to test more?”

His team used a market research survey method called a “discrete choice experiment” to find out what testing option study participants would most likely seek out. Perhaps unsurprisingly, people preferred a less invasive collection of an oral collection over the more widely-performed deep swab of the nasopharynx. And there was an even stronger preference for the convenience of an at-home test over going into a medical facility.

Such rapid at-home tests are currently not widely available, but they’re cheap, and the hope is they can be scaled up.

“Now that we understand which attributes of all of the tests are most preferable, we can take what we learned about preferences and design a testing strategy that could get better uptake,” says Dr. Nash. “We’ve always thought the vaccine would be a game changer and of course it is. But while we’re waiting for it to be scaled up—and that will be for a while in many places in the country and around the world—testing is probably the thing that can make the biggest difference in reducing risk.”

Trust and the vaccine process

Concern that Americans will choose not to get the vaccine has been one obstacle to herd immunity, given growing vaccine skepticism of recent decades, and mistrust from communities of color and other groups related to unethical research practices. But it’s not just historic vaccine wariness that experts are worried about. There’s also a concern that if the current vaccine process is seen as unfairly administered, that will also deter people from getting vaccinated.

To understand how big of a role this plays, CHASING COVID is asking participants whether they believe those eligible in their communities will be able to get a vaccine as soon as it’s available. They’re also asking if they believe those who are not eligible can jump the line. The researchers will look at associations between these answers and participants’ race, ethnicity, age, and whether they themselves have been vaccinated or plan to be.

“We’re trying to get a sense of the perceived equity of the vaccine rollout in different communities around the country, and how people perceive the rollout in their communities,” says Dr. Nash.

A lurking mental health crisis

CHASING COVID is validating a suspicion many health experts feared: the mental health effects of the pandemic are significant and may be long-lasting.

“We’re continuously checking in with our participants and asking them new questions as well as a number of things we ask routinely,” says Dr. Nash. “Those include whether there’s been a significant loss of income or employment in the household, or concerns about paying the rent or mortgage; and we routinely screen people for symptoms of anxiety and depression and alcohol use, substance use, food security, and domestic violence.”

In April 2020, 35 percent of participants reported moderate to severe anxiety symptoms, much greater than 20 percent anxiety rates in a representative pre-pandemic sample of U.S. adults. Anxiety levels were even higher in those who lost income due to Covid-19 or experienced symptoms of the virus, along with participants with a previous diagnosis of depression.

“It could reflect differences between our cohort and the U.S. population at large, but more likely it reflects what we’ve been going through over the past year,” Dr. Nash says.

The legacy of longitudinal studies

Longitudinal studies like CHASING COVID are more costly and time-consuming than cross-sectional studies, which look at data collected at one point in time. Participants in longitudinal studies are enrolled for months if not years and regularly provide everything from bio-specimens to survey data. (As part of their participation, CHASING COVID cohort members receive free antibody tests, gift cards of $10 for completing a 15-20 minute survey and $20 for submitting blood spot specimens).

“I didn’t realize it back in the early days when I first said I would participate in the study, but as the pushback to Covid has happened and the deniers have had so much media time, it has been really important to me that scientists have as much good data to work with as possible,” says one participant, Betty M., who lives in Colorado, about her experience in the study.

Though costly, longitudinal studies, have a historic legacy of providing information that has led to dramatic improvements in societies’ public health.

Perhaps the most famous example is the long-running Framingham Heart Study, which, from tracking thousands of residents in a Massachusetts town over many years, identified major risk factors of heart disease like cigarette smoking, being overweight, and high cholesterol. These findings made it possible to prevent cardiac events through lifestyle changes and medication, rather than in response to a heart attack or stroke, contributing to a dramatic decline in these events.

The study’s duration means that the researchers can adapt their survey to track how changing developments in the pandemic are impacting the cohort.

“The flexibility of being able to add questions is incredible,” says Kulkarni. “When we realized that long-haul Covid was happening, we quickly added questions and were able to identify over 150 long haulers in our cohort.”

With the virus expected to be a part of society for a long time, the findings from CHASING COVID will be relevant well after the pandemic is controlled.

Says Dr. Nash: “Hopefully this study can serve as an important touch point in taking stock for what we can still change, what we need to prioritize, and certainly for future pandemics—and we know there will be future pandemics.”