Listening to Patients: Improving Care for Long COVID and Other Conditions
Big-picture epidemiological research into Long COVID is helping guide medicine toward a more holistic and patient-centered approach. At Yale School of Medicine (YSM), the Innovative Support for Patients with SARS-CoV-2 Infections Registry (INSPIRE) study, co-led by epidemiologist Arjun Venkatesh, MD, and cardiologist Erica Spatz, MD, has been following nearly 5,000 people who’ve been diagnosed with COVID-19 and highlights the importance of researchers and clinicians listening to patients. Its unique, patient-centric approach could benefit not only those with Long COVID, but also many people who already live with other poorly understood chronic syndromes.
Research compares outcomes following SARS-CoV-2 infection
The INSPIRE study spans eight research institutions around the country, including Yale New Haven Health; Rush University Medical Center; the University of Washington; the University of Texas Health Science Center at Houston; the University of Texas Southwestern Medical Center; the University of California, Los Angeles; the University of California, San Francisco; and Thomas Jefferson University. This effort, which began before vaccines were developed, tracked 4,800 people for up to 18 months who had been infected with SARS-CoV-2. The researchers are using this data to identify patients with different COVID variants and compare those who developed Long COVID with those who fully recovered soon after their initial infection.
“We wanted to document COVID and Long COVID,” Dr. Spatz says, remembering the early days of this study. “We wanted to be able to answer questions from the early COVID patients we were treating, such as what they could expect to go through and how long it would take to recover.”
The team also made efforts to ensure that those historically overlooked in medical research were included in the study. Researchers at YSM advertised on a variety of platforms and public websites and worked to find participants through YSM’s Cultural Ambassadors program, a partnership between YSM and local Black and Latino community leaders. INSPIRE also included many people over age 65 in their research data.
A unique focus on quality of life
Rather than solely observing patients’ bodies or focusing on recovery from specific symptoms, the INSPIRE study also utilized a more unique, patient-centered focus. In addition to their data collection, the researchers invited patients to describe how their lives were affected.
“We asked people about their mental health, pain, social well-being, and sleep,” says Dr. Spatz.
“Many of Long COVID’s symptoms are not bad enough to land a patient in the hospital, but they can leave people unable to work or participate in their family or social life,” Dr. Venkatesh points out. He says that clinical medicine needs to follow the lead of INSPIRE and ask patients questions about how they are feeling.
There are standardized scales for measuring patients’ quality of life and comparing them to the averages for healthy American adults or their age group. This qualitative patient-centric data, Drs. Venkatesh and Spatz believe, is more quantifiable and easier to obtain than we realize. Participants can answer surveys from their smartphones, for example, that can be accessed by clinicians or researchers.
The researchers also hope and expect that taking this approach to treating Long COVID will encourage society and clinicians to listen to and validate the experiences of patients with many kinds of chronic illnesses, including those whose symptoms are not noticeable by others.
“Chronic post-viral syndromes are common for a host of other viral conditions,” she says, “and we haven’t been paying enough attention to any of them,” says Dr. Spatz.
Future directions for research
Post-viral syndromes, including Long COVID, likely have a variety of physical causes. More multi-disciplinary research—involving scientists, therapists, and diagnosticians alike—is needed for these types of chronic conditions, the researchers say.
Dr. Spatz would like to see future research compare the experiences of those who have recovered from Long COVID with those who have not yet recovered. “We’d love to know what helped them to feel better, and when they started to feel better,” she says. “Hundreds of thousands of people around the country could contribute data and participate in this research.”
More immunological research comparing how patients describe their recovery from Long COVID with what we know about how the immune system works could also be useful, she adds.
Dr. Venkatesh hopes that greater research and awareness of this condition will benefit many people, medically and otherwise. “Chronic illness sufferers deal with a lot of stigma,” he says, “and a Long COVID definition or awareness of the harms of Long COVID will hopefully bring that stigma down.”
Christina Deptula is a freelance writer based in Davis, California.
The last word by Lisa Sanders, MD:
Research like the INSPIRE study provides a key insight into post-infectious diseases such as Long COVID. Their long view on patients’ experiences—starting with the infection itself—will reveal possible links between the different variants of COVID and the wide variety of Long COVID presentations. And by doing so, this may teach us something about the symptoms, causes, and possible treatments.
What is most important about this innovative study is that Drs. Spatz and Venkatesh seek input from those who know Long COVID best—those who actually have it and know it from the inside out. Their study has already taught us much about Long COVID, and I look forward to seeing more from them in the future.
Read other installments of Long COVID Dispatches here.
If you’d like to share your experience with Long COVID for possible use in this blog (under a pseudonym), write to us at: LongCovidDispatches@yale.edu. It may appear, space permitting, in a future post.
Information provided in Yale Medicine content is for general informational purposes only. It should never be used as a substitute for medical advice from your doctor or other qualified clinician. Always seek the individual advice of your health care provider with any questions you have regarding a medical condition.
