Balancing COVID‐19 Risk With Physical and Mental Wellness: Perspectives of Patients With Autoimmune Rheumatic Diseases Throughout the Pandemic

Abstract

ObjectivePatients with autoimmune rheumatic diseases (ARDs) are at greater risk of COVID‐19 infection and hospitalization, increasing the stress and uncertainty already associated with unpredictable conditions. These may be heightened for patients with ARDs from underrepresented minority backgrounds. This study aimed to explore patient experiences and ARD‐related challenges during the first year of the pandemic.MethodsBetween December 2020 and May 2021, 60‐minute semistructured interviews were conducted with English‐ and Spanish‐speaking adults, aged 18 years or older with self‐reported diagnosis of ARD, via phone or videoconferencing using an interview guide on living with an ARD during the pandemic. Analysis combined methods of phenomenology and content analysis through three steps: 1) summarizing interviews, 2) iteratively refining units of meaning, and 3) axial and selective coding to determine cross‐cutting themes. Study procedures were conducted by a multidisciplinary team, a majority also diagnosed with ARDs.ResultsThe research team interviewed 22 patients (39.8 ± 15.7 years old; 82.8% female; 31.8% Hispanic or Latino/a/x) with ARDs. Themes included 1) information access and understanding, 2) problem solving access to health care, 3) balancing risks, and 4) mental health implications. Within these themes, patients from underrepresented minority backgrounds faced unique challenges.ConclusionPatients with ARDs require direct and timely communication about their risk of COVID‐19 morbidity and mortality and require increased support for psychosocial and ARD‐related implications of the pandemic. Health care systems must consider ways to support patients who are balancing chronic disease management with risk reduction for contracting emerging COVID‐19 variants.