“My world has shrunk”: a mixed-methods exploration of the impact of systemic autoimmune rheumatic diseases on patients’ lives

Systemic autoimmune rheumatic diseases (SARDs) can involve physical, cognitive and mental health symptoms which have widespread impacts on patients’ lives. Research has found SARDs patients have lower quality of life and higher depression and anxiety compared to controls even after multivariate adjustment. Aim: This study aimed to explore how SARDs impact patients’ daily activities, work, relationships, wellbeing and identity. Methods: We used mixed-methods, collecting survey and interview data. In the survey, SARDs patients (n = 1853) completed the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), our co-produced “ADAPT” measure, and questions about the frequency and impact of their symptoms. General population participants (n = 463) completed a modified survey. Survey responses were analysed using t-tests and correlation analyses. Interviews with SARDs patients (n = 34) explored the impact of SARDs on patients’ lives. Interviews and open-ended survey responses were analysed thematically. Results: Qualitative results highlighted how interacting, invisible and unpredictable symptoms impact patients’ relationships and participation in daily life. This was reflected quantitatively, where SARDs patients self-reported significantly lower satisfaction with life (mean difference=-13.244, p < 0.001) and participation in life (mean difference=-18.782, p < 0.001) compared to general population participants. Reduced participation, disbelief from others and changes in appearance damaged patients’ self-esteem and identity. In line with this, patients had significantly lower scores on every item of the WEMWBS compared to general population participants (overall mean difference=-6.467, p < 0.001). Physical, cognitive, mental, social and financial impacts of SARDs combined to adversely impact participation, relationships, and sense of self. Conclusion: Our findings call for the development of psychological, social and practical support options, in addition to improved disease control.