Living with rheumatoid arthritis during the coronavirus pandemic: a longitudinal interview study

Abstract

Background/Aims The COVID-19 pandemic placed patients with rheumatoid arthritis (RA) at increased risk of poor outcomes as a result of their condition, compounded by use of immunosuppressant medication, and higher prevalence of comorbidities. As a consequence, some patients were instructed within the UK to follow strict guidelines to “shield”, severely restricting routine social interactions. This study explored patients’ longitudinal experiences of living with RA during the COVID-19 pandemic.

Methods Patients with rheumatoid arthritis, from a community hospital-based rheumatology service, participated in two semi-structured telephone interviews at baseline in autumn 2020 and 2-4 months later. Interviews were recorded and transcribed verbatim. Interpretative phenomenological analysis was undertaken by two members of the research team with input from two patient partners (KR and MB).

Results 15 participants (9 females, 10 retired, age range 45-79 years) were interviewed twice. Five themes were identified: i) fear, ii) social wellbeing, iii) physical health, iv) pre-existing self-management of RA as a coping mechanism, and v) vulnerability. The overriding emotion was one of fear of contracting COVID-19, which remained high throughout both interviews. Fear was influenced by patients’ existing knowledge of their RA and medications and the presence of other significant co-morbidities. Further influences on fear included mainstream media reports (increasing reporting of deaths and new variants) and personal knowledge (family and friends who had contracted COVID-19). The impact on social wellbeing became more pronounced as remote communications could not replicate the benefits of physical interaction. Participants reported no impact on their physical health, with increased rest resulting from restricted social interaction perceived to be beneficial. Many participants utilised the resilience they had learned as a result of having RA to cope, including stress management, pacing, and exercise. Being categorised as “clinically extremely vulnerable” led to a reassessment of self-identity, with participants not wanting to be perceived as being weak or helpless. Finally, many participants used lockdown to reflect on and reassess their personal priorities.

Conclusion This longitudinal interview study with 15 people with RA highlights that the main impact of the pandemic appeared to be on emotional wellbeing brought about by fear of COVID-19, later compounded by lack of social interaction. In this small study, participants’ physical health was reported to be stable and participants were able to use self-management skills to cope. The realisation of the seriousness of contracting COVID-19 led to feelings of vulnerability and a reassessment of self-identity. The study raises important issues for those providing healthcare to people with RA, including effective communication with awareness of its likely impact, using pre-existing self-management strategies to enhance wellbeing, and recognition of the potential for social isolation and the implications thereof.