"I Literally Convinced Myself I Was Going To Catch It And Die": Lived Experiences Of The Covid-19 Pandemic By People With Rheumatic Diseases From Four European Countries

Background: The COVID-19 pandemic has resulted in unforeseen challenges for humanity, taking a significant toll, especially immune-suppressed individuals. In this regard, health and general well-being of people with rheumatic diseases, great majority users of immunosuppressives, have been at stake. Objectives: To explore impact of COVID-19 pandemic on people with rheumatic diseases on immunosuppression during first wave, concerning a) (self-)management of their disease;b) interaction with health care team;c) emotional well-being and d) overall health. Methods: A qualitative study was conducted following a phenomenological approach. Adults (>18 years) with a rheumatic disease from four European countries (Cyprus, England, Greece, Portugal). Patients were recruited through patient's associations and social media and were invited to participate in semi-structured, audio-recorded interview or focus groups, between July -August 2020. Following a pilot study information provided was transcribed verbatim, anonymized and translated into English where necessary. An inductive approach was adopted to carry out a thematic framework analysis with assistance of ATLAS.ti to identify key themes and subthemes. Data validation strategies were employed, and Ethical approval and informed consent were obtained. Results: Participants were 24 patients (21 women, age range 33 to 74 years) divided by 7 focus-groups and 1 individual interview. Most frequent diagnoses were rheumatoid arthritis (n=7), lupus (n=4), juvenile idiopathic arthritis (n=3). Three key themes with 3-7 subthemes were identified within analytical framework, centred around impact of Covid-19 on patients' lives (Figure 1): i) individual person (e.g. fear for myself and family, social isolation and lack of personal freedom, more time with family) ii) health settings (e.g. (un)clear information about risks of contamination, fear or risk of shortages of medication, remote consultations), and iii) work and community (e.g. persistent stress due to mass media exposure, lack of awareness by others about patients' rheumatic disease and its disclosure, hope and suspicion about new vaccine development: I hear that they will ask vulnerable groups to have vaccine first (.) Why is that we will be again innocent victims)?. Findings were similar across countries, except for spirituality (i.e. pandemic as the hand of God), a coping subtheme particular to Portugal. These main themes resonated well with social ecological model and Walsh's Family Resilience Process [1,2]. Conclusion: When experiencing a significant life-event people require some time to process different lived experiences. This study provides insights on how patients from four countries coped with new challenges. Such insights are invaluable for health care providers and policy makers, in guiding more meaningful support tailored to individual needs, especially at times of crisis. The study highlights impact of COVID-19 on lives of people with rheumatic disease. A follow-up study is currently underway to examine effect of subsequent waves of pandemic.