Managing Rheumatic Patients in the COVID Era
Being at the US epicenter of the COVID-19 pandemic in the spring of 2020 created tremendous challenges for the Division of Rheumatology at HSS. These included shifting to telemedicine to care for patients with rheumatic diseases at a time when most people were afraid to visit medical facilities and learning to care for and counsel patients with autoimmune diseases who were at risk for infection with SARS-CoV-2. HSS also had to ensure the health and safety of staff, especially those who worked directly with COVID-19-patients, when whole floors at HSS were converted to COVID-19 wards.
However, the pandemic also provided opportunities to perform meaningful research to ensure the best health for our rheumatology patients. This included studies on whether patients with rheumatic disease are at higher risk for getting COVID-19 or having severe outcomes, looking at how patients managed their rheumatologic medications during the pandemic and around COVID-19 vaccinations and examining the impact of stress, anxiety and depression on patients’ rheumatic disease symptoms. This work has implications not only for the ongoing pandemic but also for the routine management of patients, offering deep insight into fundamental questions about the interplay between the immune system, viruses and life stressors.
While still mired in the first wave of infections, HSS physician-scientists had the foresight to begin thinking about how they could harness the hospital’s patient population to get an in-depth look at the relationship between rheumatic disease and COVID-19. Within a few months of the pandemic onset in New York, rheumatologists Medha Barbhaiya, MD, MPH, and Lisa Mandl, MD, MPH, had already begun assembling a cohort and asking COVID-19–focused questions for several studies.
“Early on, there was so much controversy about how immunosuppressant medications might impact both contracting COVID-19 and the length and severity of disease symptoms for those who do contract it,” Dr. Mandl says. “We realized we could learn a lot by surveying our patients while the pandemic was still going on.”
“Anecdotally, we were also hearing about patients holding or modifying their medications,” Dr. Barbhaiya adds. “An unknown question was how patients’ behaviors are affected by these kinds of major events and what we could learn from those behaviors that would help us to guide patients in the future.”
An unknown question was how patients’ behaviors are affected…and what we could learn from those behaviors
In April and May of 2020, Drs. Mandl and Barbhaiya and colleagues sent out a questionnaire to about 28,000 rheumatology patients at HSS. They asked about patients’ experiences with COVID-19, their medication usage and their overall health-related quality of life.
“We contacted any patient who had been seen within the Division of Rheumatology over the previous two-year period,” Dr. Mandl says. “Many had systematic rheumatic diseases, but others had aches and pains that turned out to be musculoskeletal or mechanical rather than autoimmune. This gave us a non-autoimmune control group, which adds to the strength of our dataset.”
Data showed that patients are making potentially significant changes in their medications without physician oversight
In November 2020, in an oral presentation at the American College of Rheumatology conference, Dr. Barbhaiya presented data on how rheumatology patients at HSS modified their medications during the early stage of the pandemic. The study reported that one-fourth of immunomodulatory/immunosuppressive medications used by surveyed rheumatology patients were modified. Although more than half of medication reductions or discontinuations were recommended by a physician, one-third of discontinuations were self-directed by patients. These early data showed that patients were making potentially significant changes in their medications without physician oversight. Follow-up is ongoing to assess how these changes affect disease course.
In December 2020, a study led by Drs. Barbhaiya and Mandl and published in Arthritis Care & Research was the first to report the experiences of pregnant women with rheumatic disease. Of the approximately 1,500 women of reproductive age who responded to the survey, 61 of them (4 percent) reported being pregnant during the pandemic.
The study showed that rates of COVID-19 infection were similar among pregnant and nonpregnant women, and that pregnancy was associated with a shorter duration of COVID-19 symptoms but a higher prevalence of loss of smell or taste. About two-thirds of patients reported that the pandemic impacted their prenatal care, which could have important implications for these high-risk patients, Dr. Barbhaiya notes. “Overall, so few women in our cohort were hospitalized for severe COVID-19 that we were not able to evaluate whether the disease was more severe during pregnancy,” Dr. Barbhaiya says.
A second questionnaire, distributed in March 2021, was sent to approximately 7,500 additional patients. In the intervening year, many more patients had contracted COVID-19 and vaccines had begun to be distributed, which allowed the investigators to explore new questions. For example, they studied the experiences of so-called “long haulers,” patients who have a very slow recovery from acute COVID-19 infection.
In September 2021, a study utilizing these new data was published in the Annals of Rheumatic Diseases. This study looked at the relationship between COVID-19 vaccination and disease flares in patients with systemic rheumatic diseases. The researchers found that although 85 percent of patients did not experience flares, of the 15 percent who did, flares were mostly moderate to severe, with some lasting longer than three weeks. The flares were generally “typical” of the patients’ usual flares, suggesting that the symptoms were not simply side effects of the vaccine itself. The team is continuing to study why certain patients with rheumatic disease have moderate or severe flares after COVID-19 vaccination.
[Long-haul COVID-19] patients were more likely to have more medical comorbidities and a smoking history and to be using corticosteroids
At the November 2021 meeting of the American College of Rheumatology, researchers presented seven additional analyses. This included a study looking at rheumatology patients with long-haul COVID-19. The investigators found that more than half of rheumatology outpatients who reported having COVID-19 also reported symptoms lasting for longer than one month. These patients were more likely to have a greater number of medical comorbidities and a smoking history and to be using corticosteroids at the time of COVID-19 diagnosis than those with COVID-19 symptoms lasting less than a month. Patients who reported symptoms lasting longer than than one month also reported significantly increased depression, anxiety, pain and fatigue at the time of survey than the patients whose COVID-19 symptoms lasted for a shorter time. Other studies presented related to flares after vaccination reported by patients with lupus, vaccine hesitancy in rheumatology patients and medication modifications at the time of vaccination.
The researchers anticipate that future questionnaires distributed at regular intervals will enable them to collect even more information, including data on the long-term effects of COVID-19 on mental and physical health, the effectiveness of vaccines in people with rheumatologic diseases and the severity of breakthrough infections in patients taking immunomodulatory or immunosuppressive medications.
“We’re able to do these kinds of patient-centered studies because HSS has recognized the importance of clinical research,” Dr. Mandl says. “HSS also provides access to crucial research infrastructure, including a biostatistics core and the Clinical and Translational Science Center at Weill Cornell Medicine.
"And of course, we have one of the biggest rheumatology divisions in the country, which means we have large numbers of wonderful patients who are willing to give of their time to help us better understand the impact of COVID-19 on rheumatic disease.”
“We’re tremendously grateful to our patients who took the time to answer these long questionnaires and were willing to provide such granular data,” Dr. Barbhaiya concludes. “It really speaks to how much our patients want to contribute to these research efforts. These data will continue to be a valuable resource for a long time.”