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Objective Lupus nephritis (LN) is a major cause of morbidity and mortality, affecting up to 60% of patients with systemic lupus erythematosus (SLE). The perspectives of patients with SLE have been explored; however, little is known of the lived experiences of patients with LN.Methods Patients aged ≥18 years with biopsy-proven pure or mixed International Society of Nephrology/Renal Pathology Society Class III, IV or V LN were purposefully recruited from a Canadian lupus cohort to participate in a photovoice (visual–narrative participatory research method) exercise. Participants took photos of what LN means to them, impacts on daily life and factors impacting LN management. Photos were shared and discussed in focus groups.Results 13 individuals with LN participated (92.3% were female; mean (SD) age was 41.7 (14.0) years). The mean (SD) number of photos shared per participant was 4.2 (0.9). Photos (n=54) depicted activities/settings that contribute to well-being (n=15), the participants themselves (n=13), healthcare experiences (n=10), home (n=4), community (n=2), friends (n=2), work (n=2) and other challenges (n=6). All participants described physical and psychosocial impacts of living with LN. Although 12 mentioned activities/settings that contribute to well-being (eg, time in natural environments), participants were consistently reminded of limitations imposed by LN due to physical symptoms, challenges presented by the physical environment and the altered life trajectories experienced. Participants discussed the dual burden of LN and the associated medication journey; side effects and medication-related financial challenges were highlighted by ten and five participants, respectively.Conclusions Participants reported a substantial psychosocial burden associated with altered life trajectories, the dual burden of LN and the associated medication journey, and the conflicting role of the physical environment. The need for flexibility (ie, from employers, themselves) is an essential component of navigating altered life trajectories.

Objective Lupus nephritis (LN) is one of the most severe manifestations of SLE; however, we know little about the lived experience of LN. This research investigates patient experiences and perspectives of (1) LN diagnosis; (2) living with LN; and (3) LN healthcare and treatment.Methods Patients aged ≥18 years with biopsy-proven pure or mixed International Society of Nephrology/Renal Pathology Society class III, IV or V LN were purposefully recruited from a Canadian lupus cohort to participate in semistructured in-depth interviews.Results Thirty patients with LN completed the interviews. The mean (SD) age was 42.1 (16.4) years, and 86.7% were female. Participants described challenges seeking, receiving and adjusting to a LN diagnosis, and some reported that their diagnosis process took weeks to years. While 16 participants were provided resources by healthcare providers to help them through the process of diagnosis, the need for accessible LN-specific information at diagnosis was highlighted (n=18). Participants also described the unpredictability of living with LN, particularly related to impacts on physical and mental health, relationships, leisure activities, employment and education, and family planning. While most (n=26) participants reported a positive impression of their care, the side effects of LN medications and the need to increase patient and societal awareness/understanding of LN were highlighted in the context of healthcare and treatment.Conclusions The unpredictability of living with LN, the heavy treatment burden and a lack of patient/societal awareness substantially affect the lived experience of LN. These findings will inform the development of LN-specific patient resources to increase understanding of LN and improve well-being for patients.