ABSTRACT
Background/Aims Psychological distress is prevalent in people with inflammatory arthritis. In populations with axial spondyloarthritis (SpA), the risk of developing mental ill-health is high - for depression more than twice that of control populations. Positive emotions are protective against psychological distress and emotional wellbeing is favourably associated with physical illness prognosis. However, the emotional experiences of people who live with axial SpA are not well understood. This study aimed to explore and synthesise qualitative data about the emotional experience of living with axial SpA and identify barriers and facilitators to emotional wellbeing. Methods First, a systematic review and thematic synthesis was conducted. Nine databases were searched from inception to December 2019. Qualitative and mixed methods studies were included if they reported qualitative participant level data about the lived emotional experiences of people with axial SpA and were published in English or German. The search was updated in March 2021. Study quality was assessed using a modified version of the CASP (Critical Appraisal Skills Programme) qualitative tool. Grey literature was appraised using the Authority, Accuracy, Coverage, Objectivity, Date, Significance (AACODS) checklist. Data were extracted, coded and categorised. Synthesis involved translation of concepts from one study into another and development of descriptive themes. Second, four axial SpA online forums were searched from inception to June 2020 for posts from UK-based individuals with axial SpA containing data about their emotional experiences of axial SpA. Thematic analysis was undertaken. Results Of 10,824 database records screened, 27 studies, published between 1995 and 2020, went forward for synthesis. Study populations included people diagnosed with Ankylosing Spondylitis (n=1143), axial SpA (n=53) and non-radiographic axial SpA (n=18). Two studies with mixed populations (n=37) did not specify numbers diagnosed with axial SpA. Most participants were male and had established disease. No studies specifically focused on the psychological experiences of living with axial SpA. 537 posts were identified from online fora, 278 (52%) of which were from men. Seven descriptive themes were generated from the qualitative synthesis: delayed diagnosis: a barrier to emotional wellbeing;disruptive symptoms: a source of mood swings;work disability: a loss of self-esteem;obstacles in interpersonal relationships: a trigger of distress;taking up exercise: 'personal pride' or 'unwelcomed reminders';anti-TNF therapy: hope reignited despite concerns;journey of acceptance: worry mixed with hope. The findings from our review of online fora supported and validated these themes. One additional theme - COVID-19: uncertainty and anxiety during the pandemic - was developed from constructs identified from online posts. Conclusion Our findings highlight substantial negative and mixed emotions experienced by people with axial SpA. However, data about the emotional experiences of women, people diagnosed with non-radiographic axial SpA, and those in the early stages of diagnosis, are limited.
ABSTRACT
Background: The COVID-19 pandemic has resulted in unforeseen challenges for humanity, taking a significant toll, especially the immune-suppressed individuals. In this regard, the health and general well-being of people with rheumatic diseases, the great majority users of immunosuppressives, have been at stake. Objectives: To explore the impact of the COVID-19 pandemic on people with rheumatic diseases on immunosuppression during the first wave, concerning a) (self-)management of their disease;b) interaction with the 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 the 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 the 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 the analytical framework, centred around the impact of the 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 the vaccine first (.) Why is that we will be again the innocent victims")?. Findings were similar across countries, except for spirituality (i.e. the pandemic as "the hand of God"), a coping subtheme particular to Portugal. These main themes resonated well with the social ecological model and Walsh's Family Resilience Process [1,2]. Conclusion: When experiencing a significant life-event people require some time to process the different lived experiences. This study provides insights on how patients from four countries coped with the 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 the impact of COVID-19 on the lives of people with rheumatic disease. A follow-up study is currently underway to examine the effect of subsequent waves of the pandemic.