老年系统性红斑狼疮患者的生活经历：患者视角
The Lived Experiences of Older Adults With Systemic Lupus Erythematosus: Patient Perspectives.
作者信息
Lieber Sarah B, Young Sarah R, Shea Yvonne, Gottesman Sarah P, Lipschultz Robyn, Sun Dongmei, Reid M Carrington, Mandl Lisa A, Navarro-Millán Iris
机构信息
S.B. Lieber, MD, MS, L.A. Mandl, MD, MPH, Division of Rheumatology, Hospital for Special Surgery, and Department of Medicine, Weill Cornell Medicine;
S.R. Young, PhD, MSW, Department of Medicine, and Division of General Internal Medicine, Weill Cornell Medicine.
出版信息
J Rheumatol. 2025 Feb 1;52(2):145-150. doi: 10.3899/jrheum.2024-0478.
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.
目的
对于系统性红斑狼疮（SLE）患者对衰老的认知了解甚少。掌握这些信息有助于确定未来行为干预的目标，以实现SLE患者的成功衰老。这项定性研究旨在从老年SLE患者中引出衰老的生活经历和本质。
方法
我们对在单一三级中心就诊的年龄≥65岁的SLE成年患者进行了半结构化访谈。采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、SLE平均病程为26.3年（范围5 - 62年）的参与者中，出现了4个总体主题来描述SLE患者衰老的本质：SLE与合并症、SLE症状的累积效应、SLE疾病轨迹以及对衰老的自我认知。老年SLE患者分享了不同的衰老经历，包括对多种疾病并存和疾病轨迹的看法，以及对衰老的自我认知。
结论
我们发现了对衰老的积极和消极自我认知，这些认知往往受到参与者SLE症状累积效应和SLE疾病轨迹生活经历的影响，并突出了他们经历的多样性。了解该人群对衰老的自我认知可为制定循证策略提供依据，以增强老年SLE患者的积极性和恢复力，从而改善包括健康相关生活质量在内的健康相关结局。
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