Research Summaries

In this RECOVER study, researchers looked at how people with Long COVID, caregivers, and community members were included as partners in research. These partners are called Representatives. Researchers studied how Representatives joined RECOVER, how they took part in meetings and decisions, and how well this process worked. Researchers used surveys to learn about Representatives’ roles and experiences. The study found that most Representatives understood their roles and responsibilities. About 3 out of 4 said they felt comfortable sharing their ideas and taking part in decisions. The study found challenges, including words used in meetings that were hard to understand and not having enough time to share opinions. It also highlighted a need for clearer communication and more participation from rural and tribal communities. In addition to sharing their lived experiences, RECOVER Representatives work with researchers to help decide how studies should be conducted and how study results should be shared. Representatives' input keeps the research focused on what matters most to people affected by Long COVID. Representatives' input also makes it easier for everyone to understand what RECOVER researchers have done and what they've learned about Long COVID. This study is important because it shows that working with Representatives can help build trust between researchers and the community. Researchers also recommend ways that future studies can successfully partner with patients and community members.

In this RECOVER study, researchers looked at the link between Long COVID and school difficulties in school-age children (ages 6 –11 years old) and adolescents (ages 12–17 years old). Researchers studied 1,976 children across the US, including 406 school-age children and 1,570 adolescents, both with and without Long COVID. Based on information about school performance reported by their caregivers, children with Long COVID were about twice as likely to have worsened grades after the COVID-19 pandemic compared to those without Long COVID. About 1 in 5 school-age children and nearly 3 in 10 adolescents with Long COVID had worse grades. Those who experienced Long COVID were also more likely to have trouble paying attention in school and had a harder time having fun with their friends. Children and adolescents with Long COVID were also more likely to have an Individualized Education Program (IEP) or be in the process of getting one. An IEP is a special plan that schools use to help students with special needs. These findings show that Long COVID can make school harder for children and adolescents. The study also highlights the continued need for schools to offer support to students with Long COVID.

This RECOVER study looked at whether social determinants of health (SDOH) affect the risk of children developing Long COVID after having COVID-19. SDOH are the conditions in the places where people live, learn, work, and play that can affect health, such as safety or access to food, education, and healthcare. Researchers looked at survey data from more than 4,500 children. The surveys included questions about family income, access to food, school life, and how children are treated by others. The study found that children whose families struggled to pay for basic needs, like housing and food, were much more likely to have Long COVID. However, children in families who always had access to food, even if they struggled to pay for other things, were less likely to have Long COVID. This study also found that children who felt they were treated worse than others or parents who did not have enough support from friends and family had a higher chance of Long COVID. This RECOVER study is important because it shows that access to food and a supportive community may play a key role in protecting children from developing Long COVID.

In this RECOVER study, researchers wanted to find out how Long COVID symptoms change over 15 months. To do this, researchers studied 3,659 adults who had COVID-19 before joining the RECOVER study or while they were enrolled. Researchers found that Long COVID does not look the same in everyone. Instead, people’s Long COVID symptoms usually fell into 1 of 8 different patterns over time. While most people felt better after recovering from COVID-19, about 1 in 20 participants had symptoms of Long COVID that lasted throughout the entire study. About 3 in 25 participants with Long COVID had symptoms that came and went. Other participants did not have Long COVID symptoms early on but started having health problems many months after having COVID-19. These findings show that doctors should continue monitoring patients for a long time after they have COVID-19 because their symptoms can stay, come and go, or start several months after getting sick. Understanding these patterns will help researchers find better ways to prevent and treat Long COVID in different groups of people.

This RECOVER study looked at whether the COVID-19 vaccine could help protect teenagers ages 12–17 from developing Long COVID. Researchers studied 1,231 teenagers enrolled in RECOVER who had confirmed COVID-19. Some were vaccinated before they got COVID-19 (724 teenagers), and some were not (507 teenagers). Researchers made sure the 2 groups were similar in terms of sex, date when they got COVID-19, and when they joined the study to make comparisons fair. They found that teenagers who were vaccinated in the 6 months before getting COVID-19 for the first time were about one-third less likely to get Long COVID. This study is important because it shows that COVID-19 vaccines, which were previously found to prevent getting COVID-19, can also protect against developing Long COVID in young people. 

This RECOVER study looked at whether pregnant women who had the Omicron type of COVID-19 were more likely to have Long COVID than women who were not pregnant when they had the Omicron type of COVID-19. Researchers studied the symptom surveys and study visits of more than 2,400 RECOVER pregnancy participants, ages 18–45, to see if being pregnant while having COVID-19 impacted the risk of developing Long COVID. They found that about 10.2% of the participants who had COVID-19 while pregnant later got Long COVID, compared with 10.6% of the those who were not pregnant at the time of infection. This suggests that there was no real difference in the chance of getting Long COVID based on whether someone was pregnant or not when they got COVID-19. This study is important because it helps researchers better understand the risk of developing COVID-19 based on whether or not someone is pregnant.

This RECOVER study looked at how Long COVID symptoms change as people get older and how often those changes happen. Researchers compared younger adults (ages 18–59) and older adults (age 60 and older) who did and did not have COVID-19. They found that Long COVID was most common in people ages 40–59, and less common in those ages 70 and older. Among the participants ages 70 and older, symptoms like fatigue, pain, and hearing problems were less helpful in identifying Long COVID because they were also common in older people who had never had COVID-19. Instead, symptoms of Long COVID in older adults were more likely to include problems with smell and taste as well as stomach issues. This finding is important because it helps doctors know what to look for when diagnosing and treating Long COVID in older patients.

This RECOVER study looked at how sense of smell changed over time in people who had COVID-19. Researchers gave a “scratch-and-sniff” test to a large group of people about 2 years after they had COVID-19. This test, called the University of Pennsylvania Identification Test (UPSIT), checks whether people can smell certain odors. The study found that 8 out of 10 people who felt that they had lost or had changes in smell after having COVID-19 were in fact not able to smell the odors normally. Even two-thirds of the people who thought their sense of smell was completely normal had a weaker sense of smell than they realized. These findings show that a weaker sense of smell can be a common and lasting problem after COVID-19. Because changes in smell have been linked to memory and thinking problems in other conditions, this could mean that people with changes in smell from COVID-19 could be at risk for thinking and memory issues. Doctors should use special smell tests to point out smell loss that patients may not notice to help them understand their condition and its risks, like not being able to smell smoke or spoiled food.

This RECOVER study looked at how social determinants of health (SDoH) affect the risk of developing Long COVID after getting COVID-19. SDoH are the living and working conditions that affect a person’s health, such as how safe a neighborhood is, access to education, and how easy it is to get healthcare. Between October 2021 and November 2023, RECOVER researchers studied adults from 33 states, Washington, DC, and Puerto Rico who recently had COVID-19. These adults filled out surveys about their social situations, health conditions, and pregnancy status. The researchers followed them for 6 months to see who developed symptoms of Long COVID. They looked at SDoH including money problems, not having enough food, level of education, problems getting health care, having friends or family for support, and where someone lives. Out of 3,787 participants, 418 people (about 11%) developed Long COVID. Researchers found that people with money problems, not enough food, less education, trouble getting healthcare, and little social support had a higher risk of experiencing Long COVID. The researchers suggest that future studies explore whether addressing SDoH-related needs can help lower the chance of developing long-term effects of COVID-19.