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

Abstract

Objective: Little is known about perceptions of aging among individuals living 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.

Methods: We conducted semi-structured interviews with adults ≥65 years of age 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.

Results: Among 30 participants with mean age of 71.3 years and mean SLE duration of 26.3 years (range 5 to 62 years), four overarching themes emerged to describe the essence of aging with SLE: SLE and comorbid conditions, cumulative impact 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 and self-perceptions of aging.

Conclusion: We identified both positive and negative self-perceptions of aging, often informed by participants' lived experiences of cumulative impact of SLE symptoms and SLE disease trajectory and underscoring the diversity of their experiences. Understanding self-perceptions of aging in this population could inform 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.