The Lived Experiences of Older Adults With Systemic Lupus Erythematosus: Patient Perspectives

Little is known about perceptions of aging among individuals with systemic lupus erythematosus (SLE). Gaining this knowledge could help to identify targets for future behavioral interventions aimed at successful aging with SLE. This qualitative study sought to elicit the lived experiences and essence of aging from older adults with SLE.

We conducted semistructured interviews with adults aged ≥ 65 years with SLE seen at a single tertiary center. Qualitative data were analyzed thematically using a phenomenological approach. We collected data on sociodemographic characteristics and disease features prior to each qualitative interview.

Among 30 participants with a mean age of 71.3 years and mean SLE duration of 26.3 years (range 5-62 yrs), 4 overarching themes emerged to describe the essence of aging with SLE: SLE and comorbid conditions, cumulative effect of SLE symptoms, SLE disease trajectory, and self-perceptions of aging. Older adults with SLE shared variable aging experiences, including perspectives on multimorbidity and disease trajectory, as well as self-perceptions of aging.

We identified both positive and negative self-perceptions of aging, often informed by participants' lived experiences of cumulative effects of SLE symptoms and SLE disease trajectory, and underscoring the diversity of their experiences. Understanding self-perceptions of aging in this population could inform the development of evidence-based strategies to empower older adults with SLE to harness their positivity and resilience, and thus improve health-related outcomes, including health-related quality of life.