Exploring Patient Experiences, Challenges of Rheumatic Disease Management During the Pandemic

In an interview with HCPLive Rheumatology, Courtney Wells, PhD, MPH, LGSW, assistant professor and field director at the University of Wisconsin- River Falls, discussed the results of her recent study, “Balancing COVID-19 Risk With Physical and Mental Wellness: Perspectives of Patients With Autoimmune Rheumatic Diseases Throughout the Pandemic.” The study evaluated the patient experience and rheumatic disease-related challenges that they faced during the first year of the pandemic.

“Our team was inspired to assess this topic within this patient population due to the unique circumstances of the pandemic,” Wells explained. “As the world was going through a challenging time, we felt the need to connect with individuals and understand their experiences. While scientific research was emerging about the virus and vaccines, there was a lack of firsthand accounts from patients themselves.”

Wells and her team interviewed participants from various locations across the country, utilizing different methods of communication, including phone, Zoom, or Teams, based on the participants' preferences. To ensure diversity within the patient population, they collaborated with clinics and healthcare providers, leveraged social media, and utilized word-of-mouth referrals.

The interviews were primarily conducted by Wells and her colleague, Kristine Carandang, with the assistance of a team member who was fluent in Spanish. This allowed them to conduct interviews and transcribe them in Spanish, broadening the participant pool.

“When it comes to telemedicine, opinions may vary,” Wells stated. “During the time of our study, it felt like the only viable option given the circumstances. With clinics closing down and limited access to healthcare and research, telemedicine provided a valuable avenue to reach and connect with people across the country.”

Several themes emerged throughout the interview process, with the overarching message revolving around mental health, although the other themes were interconnected and contributed to this central theme. Participants faced challenges in accessing information and care, which led to overwhelming decision-making processes. They described the need to balance risks in their daily lives. These factors, combined, created a difficult mental health situation for many individuals. The impact extended beyond managing their diseases, as it encompassed the lack of access to various resources necessary for self-care.

Almost all participants discussed their mental health experiences and the stress they endured during the pandemic without much prompting. Some had pre-existing mental health conditions, while others were diagnosed with conditions like PTSD specifically due to the pandemic. The symptoms ranged from distress to more extreme cases, all directly linked to their health conditions and the challenges of managing them during the pandemic.

This transcript was edited for clarity.