Perceptions of risk in people with inflammatory arthritis during the COVID-19 pandemic

Lay Summary What does this mean for patients? People with inflammatory arthritis have an increased risk of serious infection. We interviewed 15 adults with inflammatory arthritis, three times over 7 months during the pandemic, to explore how patients interpreted their own risk of coronavirus disease 2019 (COVID-19). We found that people were fearful that COVID-19 could be fatal as a result of having inflammatory arthritis. This fear was heightened by media reports of new variants, seeing family and friends with COVID-19, and receiving letters from the hospital and government confirming their increased risk. Awareness of risk remained high throughout the three interviews, which might reflect the lack of evidence, at that time, regarding the exact risk to people with an inflammatory arthritis. Our work adds to previous research suggesting that individual risk needs to be communicated in such a way that it contains information about how risk can be reduced without inducing further distress. Patient involvement in how risk can be communicated effectively is required. Objective People with inflammatory arthritis have an increased incidence of serious illness and mortality, placing them at risk of poor outcomes from coronavirus disease 2019 (COVID-19). This study explored patients' perceptions of risk from COVID-19 over a longitudinal period of the pandemic. Methods Fifteen adults with inflammatory arthritis attending a National Health Service rheumatology service each took part in three semi-structured telephone interviews conducted between 16 September 2020 and 29 July 2021. Interpretive phenomenological analysis was undertaken by two researchers and two public contributors. Results Four main themes relating to perceptions of risk from COVID-19 were identified: inflammatory arthritis; medications and co-morbidities; immediate social environment; health policy communication; and media influence. Participants recognized that having inflammatory arthritis increased their individual risk. Perceptions of risk and associated fear increased during the pandemic, influenced by family/friends who had had COVID-19 and health policy communications. The perceived constant use of negative messages led to many participants disengaging with the media. At the final interviews, when the vaccination programme was well established, participants continued to assess the risk and benefits of engaging in activities. Conclusion This study demonstrates the breadth of factors that influenced perceptions of risk in people with an inflammatory arthritis. As health professionals, we have only a small sphere of influence over some of these factors, namely health-care communications. People with inflammatory arthritis appropriately knew that their condition increased their infection risk, but more could be done to consider how and to what extent we involve patients in explaining risk at times of crisis.