The World Health Organization (WHO) recently declared an end to the global COVID-19 pandemic1; however, we’re still learning how this worldwide health crisis has affected different patient populations. Continued research to understand how patients experienced effects of the pandemic will inform responses by public health and health policy authorities, health care providers, support and allied health organizations, and other stakeholders, such as regulatory officials and health insurance representatives, in the future.
During the COVID-19 pandemic, patients with autoimmune rheumatic diseases (ARDs), such as rheumatoid arthritis (RA), psoriatic arthritis, ankylosing spondylitis, lupus, and vasculitis, had known risk factors that increased their likelihood of infections, complications from infection, and mortality from COVID-19 due to compromised immune systems related to their illness or the medications often prescribed to treat these conditions.2
Simultaneously, the ARD patient population found that their access to routine and acute medical treatments decreased and were disrupted as stay-at-home orders influenced doctors’ offices, infusion centers, and other sources of medical care. Studies have shown that during the pandemic, patients with ARDs were less inclined to go to the hospital for urgent medical procedures and outpatient appointments during the COVID-19 pandemic than prior to it, and they have demonstrated poorer medication adherence.3
The COVID-19 pandemic also exacerbated quality of life and mental health issues among vulnerable patients, particularly among the underserved patient subpopulations affected by systemic health care disparities.
Quantitative evaluation using benchmarks such as the number of rheumatology appointments and telehealth visits, were found to be insufficient to explain the extent of the many effects of the pandemic on ARDs.
Our team recently conducted a rigorous qualitative study4 to fill in some information gaps, as no study, to our knowledge, has captured the wide range of patient perspectives in the US throughout the first year of the pandemic. This time frame includes patients’ experiences during the initial vaccine rollout. We also wanted to dive deeper into how COVID-19-related stress and burden on patients with ARDs was exacerbated by the existing health disparities experienced by patients in underserved populations. These are the patients who, even pre-COVID-19, were less likely to receive quality care, related to socioeconomic and other systemic factors.
As explained in our study, we used a “theoretically informed approach combining thematic analysis of patient interviews and phenomenology and emphasized the importance of cultural competency and diverse patient representation, as emphasized by previous qualitative work in rheumatology.”
Identifying Diverse Populations Critical to Robust Understanding
Between December 2020 and May 2021, interviews with English- and Spanish-speaking adults, aged 18 years and older with a self-reported diagnosis of ARD, were conducted with the aim of understanding patient knowledge, concerns, and behaviors regarding living with an ARD during the COVID-19 pandemic, and its impact on quality of life.
The 3-step process that informed content analysis included summarizing interviews, iteratively refining units of meaning, and then, using axial and selective coding to determine cross-cutting themes. Notably, study procedures were conducted by a multidisciplinary team, many of whom also reported an ARD diagnosis. A total of 22 patients (mean age, 39.8±15.7 years) were interviewed; 82.8% were women and 31.8% were Hispanic/Latinx.4
While the study had a large percentage of Hispanic/Latinx participants and included interviews in Spanish, it could have included stronger representation from other racial and ethnic minority groups. Our future studies will continue to seek out that representation.
Balancing Risks – A Tightrope Walk for Patients
During the COVID-19 pandemic, significant challenges were posed by information processing, health care restrictions and disruptions, and balancing risks that took a toll on participants’ mental health. Participants frequently reported feelings of anxiety or sadness that were associated with the compounded burdens of COVID-19-related risk and managing ARD-related health.4
A part of the mental health burden can be attributed to how participants accessed and understood the information they received about the pandemic as it unfolded. Many felt that the broad stroke advice delivered by news or other sources rarely captured their unique circumstances. They felt compelled to make inferences about how to apply the information they had on hand to make assessments about their level of risk, which created feelings of uncertainty. Spanish-speaking participants reported additional burden in accessing quality care information.4
Participants strived to keep up their rheumatology care, but many experienced delays and reduced access to consistent care. Limitations to in-person care options were especially impactful for participants with urgent health care needs, such as active flare-ups, who faced major barriers to health care access despite their declining health status. Some participants’ clinics completely shut down at the start of the pandemic, and some patients were not offered any alternatives for care, which added stress. While the rapid uptick in telehealth options helped transition patients from in-person to remote-care, participants of the study4 reported mixed feelings. For some, it improved their quality of life and enabled meeting with their physician more easily, removing some of the barriers to in-person care, such as potentially needing to take time off from work, pay for parking, arrange childcare, etc. However, for some participants with poor internet service, telehealth was not a viable option and required more efforts to receive adequate care. One participant reported, “I had to go into town and park, and I thought I had great service, and [my lupus doctor still] was not able to see me on the screen.”
Even with the availability of telehealth, patients with ARDs felt a distressing push-pull between proactively seeking health care vs protecting their health by avoiding public spaces that potentially put them at even greater risk for exposure. Many opted to delay receiving care they deemed “less essential,” such as annual eye appointments, if they anticipated potential risky behavior during the appointment (eg, removing their mask). Others tried to avoid regular check-ins with their physicians, such as going in for bloodwork. However, most patients felt comfortable with the risk precautions employed at health care facilities. Overall, patients with ARDs frequently self-calculated their perceived risk for COVID-19 whether it was their health care or travel or participating in the daily tasks of living, such as working. Some of their fears dialed back with the availability of the vaccine.4
In addition, patients reported feelings of sadness, fear, and anxiousness. Patients identifying as being part of racial and ethnic minority groups faced additional mental loads related to issues of racial discrimination, health equity, and virus-related stigma. Further, the medical community’s focus on COVID-19 made participants feel that rheumatic diseases lacked priority in research fields.4
Overall, the analysis suggested that patients with ARDs need better access to reliable guidance, with greater efforts to offer that guidance in multiple formats and languages that make it culturally relevant and accessible to different patient populations.
The qualitative approach provided valuable insight into the diverse range of patient experiences, and the impact of barriers, such as language, medical discrimination, and lack of accessibility to care.
Although public health authorities have declared an end to the pandemic, there is a continued need to support patient communities at heightened risk for infection or complications from infection.
This article originally appeared on Rheumatology Advisor