OBJECTIVE 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. METHODS 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. RESULTS 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. CONCLUSION 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.

中文翻译：

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患有系统性红斑狼疮的老年人的生活经历：患者观点。


目的 对系统性红斑狼疮 （SLE） 患者对衰老的看法知之甚少。获得这些知识可能有助于确定未来行为干预的目标，旨在成功实现 SLE 老龄化。这项定性研究试图从患有 SLE 的老年人那里引出衰老的生活经历和本质。方法 我们对在单个三级中心看到的 65 ≥ 岁患有 SLE 的成年人进行了半结构化访谈。使用现象学方法对定性数据进行主题分析。在每次定性访谈之前，我们收集了有关社会人口学特征和疾病特征的数据。结果在 30 名平均年龄为 71.3 岁、平均 SLE 病程为 26.3 年 （范围 5-62 岁） 的参与者中，出现了 4 个总体主题来描述 SLE 衰老的本质：SLE 和合并症、SLE 症状的累积效应、SLE 疾病轨迹和衰老的自我认知。患有 SLE 的老年人分享了不同的衰老经历，包括对多病共存和疾病轨迹的看法，以及对衰老的自我认知。结论 我们确定了对衰老的积极和消极自我认知，通常由参与者对 SLE 症状和 SLE 疾病轨迹的累积影响的生活经历提供信息，并强调了他们经历的多样性。了解这一人群对老龄化的自我认知可以为制定循证策略提供信息，以增强 SLE 老年人的能力，使其能够利用他们的积极性和复原力，从而改善与健康相关的结果，包括与健康相关的生活质量。