Patients' experiences of managing their rare rheumatic disease.

Abstract

The rare autoimmune rheumatic diseases (RAIRDs) include SLE (lupus), systemic vasculitis, inflammatory myositis, SSc and sjogren's disease (SD). The objective of the study is to understand patients' experiences of living with and managing their RAIRD. Participants from the UK with a range of RAIRDs were recruited via social media including patient charity networks. Purposive sampling was used to include a range of participants with different conditions and demographic characteristics. A topic guide was developed with patient partners to guide discussions about health-related quality of life with RAIRDs, including support needs. Focus groups were conducted via online video conferencing, audio-recorded, transcribed, checked and anonymized. Data were analysed thematically by an academic psychologist and rheumatologist. Twenty-six patients with RAIRDs participated in six focus groups (between three and six people per focus group). The median age was 62 years (range 34-82), 21 (80%) were female and 21 (80%) had a diagnosis longer than the last 2 years. Five themes were identified: managing healthcare systems and health professionals; luck of the draw: variation in access and resources; trustworthy and reliable sources of support; support to live well: core care or an added extra; and dealing with the emotional fallout. This study found that patients shared experiences regardless of their specific RAIRD, suggesting that a combined intervention could meet their common support needs. Further large-scale work is required, including people who may not usually take part in research, to explore the potential content and structure of such an intervention.