Patients with autoimmune and rheumatic diseases have been a population of concern during the COVID-19 pandemic. Several studies presented at the American College of Rheumatology 2020 Convergence discussed how the pandemic impacted these patients.
Maria Danila, MD, MSc, MSPH, of the University of Alabama at Birmingham, a study author on three of these studies, discussed the findings with DocWire News.
DocWire News: What prompted you to undertake this research?
Dr. Danila: As you know, the COVID-19 pandemic kind of put us all in a pickle and disrupted our lives. As we started back in March talking amongst ourselves about how patients with autoimmune and rheumatic diseases are impacted, we figured that there was no literature out there. We hadn’t experienced something like this previously in our lives. So we thought that it would be a good idea to do a study to look at important questions that patients, clinicians, and policymakers may want to know later on in the pandemic.
We were trying to understand how concerned patients were about COVID-19, and how much their autoimmune or rheumatic disease affected this concern. We wanted to know if there was any impact, or the degree of impact, on disease management, and what happened with their treatments and infusions. We had stay-at-home orders, [so] people could not see their physicians and other health care professionals.
There were pretty rough times. So the main goal was to better understand the patient experiences, and based on that, to make sure that we provide them with the information they needed.
DocWire News: What were some of the key takeaways from the research?
Dr. Danila: We did a series of surveys, and we implemented these surveys within the membership of several patient organizations. There was ArthritisPower [that was] involved, CreakyJoints, Vasculitis Patient Powered Network, just to name a few. We also did a similar survey among the patients from a large practice network of rheumatologists.
We basically had two cohorts. The respondents from the patient organizations were most likely to have auto immune diseases, while from the second cohort, we also had patients that had osteoporosis or osteoarthritis, so, other non-autoimmune diseases. We found in both of these groups that there were many patients that avoided seeing their doctors. We found that some of them skipped the lab testing, and about anywhere between 10% to 15% of them actually stopped taking medications.
One of the most important and impactful findings of the study is the fact that about four in five patients actually stopped medications without consulting with their physicians, which is quite worrisome. The other thing that we found is that there were some patients that had respiratory illnesses and would have wanted to be tested for COVID-19, but they just couldn’t get the testing. It was quite a large number, about 40% in our cohorts.
The other thing that we found was that telehealth basically exploded. And it sounds like a truism now, but back then we didn’t expect it to ramp up so fast. For example, among the respondents from our cohort that included mostly autoimmune disease patients, about 70% of them said that they had access to telehealth, that their rheumatologist or autoimmune disease specialist was offering that type of appointment, which was really, really good to see.
In one other study that we also did, we were trying to figure out, is there something about these visits that are being cancelled now because patients were not coming to see their doctors? Were there any factors that were affecting visit cancellations? And we found that, for example, older age, residing in a rural area, Black race, Hispanic ethnicity—these patients were more likely to cancel their appointments.
We actually found that while telehealth was used by many of our respondents to the surveys, not everyone had access in a similar fashion. For example, older patients or patients with more socioeconomic deprivation or from a rural area actually had less access to telehealth, or reported less access to telehealth. All in all, these were quite interesting studies that taught us a lot about the current climate in the healthcare industry during the pandemic.
DocWire News: Did any of the studies’ findings come as a surprise?
Dr. Danila: I mentioned a little bit the fact that there were about 10% to 15% of patients that actually reported stopping their medications without discussing with their doctors. We didn’t expect such a high number of respondents to do that. Another thing is that telehealth has been promoted as a way for patients to have access, irrespective of geography. But we actually found that patients from urban areas were more likely to participate in telehealth visits compared to patients who resided in rural areas.
DocWire News: What were some of the limitations of the research?
Dr. Danila: Our methods involved cohorts with findings that are not generalizable—for example, patients who are members of online communities or may have different concerns and behaviors than the general population. In our studies, respondents were primarily White, and results and behaviors may differ based on somebody’s being part of a racial or ethnic minority.
We asked the patients about their diseases. … It was all about self-reporting rheumatoid arthritis or psoriatic arthritis. So, that can always introduce a bias for our findings. We talked a little bit about the fact that there were many patients who reported medication interruptions, but we don’t know the effect of these interruptions on disease exacerbations or flares. We actually plan to do this type of analysis as we collect more data in this project.
DocWire News: Are there any future research plans going on?
Dr. Danila: We want to certainly learn a little bit more about telehealth, and have been doing an additional survey looking at utilization of telehealth and looking to understand patients’ satisfaction and experiences with telehealth. We’re also planning to do some studies related to vaccinations and the perception about getting [the] flu vaccine, for example.
DocWire News: Any last comments or things that you’d like to share?
Dr. Danila: It’s very important for patients to take medications as prescribed. And if they consider at any time stopping a medication, it’s best to talk to their healthcare professional, their clinician, for an informed opinion. We also are getting into the flu season here in the United States, and probably immunization against flu is one of the most important aspects of preventative health that anyone can do today to prevent further disruption to our medical system as we move forward, as we talk about the potential of surges of patients with not only COVID-19, but also [the] flu.
Read Dr. Danila’s study abstracts: