Pitt researchers collect stories of covid-19 patients in Story Booth project

University of Pittsburgh researchers are gathering the personal accounts of patients who have recovered from covid-19 as part of an ongoing project called Story Booth. The archive of stories will be used as a tool to promote patient-centered outcome research — a mentality that focuses attention on patient experience and preferences to guide medical research.

The Story Booth archive goes back as far as 2016 and features the personal stories of patients with a variety of ailments, from cancer to organ transplantation.

“In the long term, we think that these kinds of studies may be particularly well-suited to provide the data that patients and their health care teams need to make better decisions,” said Kathleen McTigue, a Pitt associate professor of medicine and epidemiology and leader of the program.

Now that physicians and scientists are dealing with a mysterious virus about which little is known for certain, McTigue said Story Booth has become even more useful. The archive began collecting covid-19 stories in April and has since collected almost 40 audio files. Many of the patients, McTigue said, have expressed interest in participating in further research.

The stories can help health care providers, policymakers and researchers better understand the impact the virus has on everyday lives, she said.

“The general knowledge around covid is evolving so quickly and has so much uncertainty that it’s particularly unsettling,” she said. “Because of this, there’s particular value to being able to hear about the experiences of real people, particularly when they’re real people from your own community.”

McTigue said Story Booth participants have lamented the difficulty surrounding access to testing, frustration over reluctance among some people to wear masks and other “real world insights from experiences lived.”

“People talk about so many different aspects of their lives related to this pandemic,” McTigue said.

Many of the stories — all anonymous — are about seeking mental health treatment and feeling isolated during the pandemic. Some are about caring for and losing loved ones to the virus. More still are about the difficulty recovering from covid-19 both physically and financially.

One Story Booth participant, a 31-year-old nursing student, described being debilitated by severe flu symptoms, including shallow breathing, a high fever and fatigue. He spoke about being frustrated by the difficulty he faced in getting diagnosed and getting subsequent treatment, as doctors struggled to identify the source of the infection before covid-19 became commonplace.

“It took me down and out,” he said. “It is not to be taken lightly.”

Another participant, Jerry DiGennaro, 66, spoke to the Tribune-Review about overcoming his March bout with covid-19. DiGennaro noticed feeling sick around mid-March, when he said he passed out in the middle of a conversation with his fiancee. At the hospital, he was diagnosed with pneumonia and spent the next week or so in bed with flu-like symptoms.

He was sent home, but later returned because he was having trouble breathing. He said there were a few nights when he woke up in a sweat and had lost his sense of taste — a common symptom often indicative of the virus.

DiGennaro said he was tested March 27 and received positive results the next day. By that time, though, he had almost fully recovered.

Compared to many other patients, DiGennaro said his experience with covid-19 was mild: He said he has very few lasting symptoms, aside from fatigue and a tendency to forget words as he is speaking. But given his age, he said, he can’t be sure those are because of the virus.

Retired from a career that includes military service and currently working as a fire instructor for first responders, DiGennaro said he worries more about other threats to lives in the region — things such as opioid addiction, reckless driving. DiGennaro said he hopes sharing his experience will give some listeners hope and help them assess the risk of the disease logically.

“We are not all going to die from covid,” he said. “It affects different people differently.”