Emory University School of Medicine, Atlanta, Georgia.
Durham Veterans Affairs Medical Center and Duke University School of Medicine, Durham, North Carolina.
Arthritis Care Res (Hoboken). 2022 Sep;74(9):1468-1476. doi: 10.1002/acr.24599. Epub 2022 Jun 14.
Systemic lupus erythematosus (SLE) is a complex chronic disease associated with reduced cognitive functioning. Patients with SLE report cognitive symptoms, but cognitive assessment is not routine in SLE and little is known about day-to-day cognitive problems and their effect on disease management. As part of a pilot exploring the use of a cognitive functioning report prototype for shared decision-making in clinical encounters (the Approaches to Positive Patient-Centered Experiences of Aging in Lupus [APPEAL] Study), we investigated the relevance of cognitive assessments performed using the National Institutes of Health (NIH) Toolbox among patients with SLE.
We conducted 4 focus groups, 2 with SLE patients (n = 18) and 2 with lupus providers (physicians and nurses; n = 9), addressing cognitive issues and interest in communicating about cognition. We compared how NIH Toolbox cognitive domains (episodic memory, working memory, processing speed, attention and inhibitory control, cognitive flexibility) matched with patient- and provider-identified cognitive problems and needs.
Patients identified all NIH domains with rich experiential examples; providers identified fewer domains and offered less detail. An unanticipated additional domain was prospective memory (i.e., problems with remembering future actions). Use of technologic aids (e.g., smart phone alerts) was mentioned by some patients, but not providers, and represent a potential opportunity for medical care. All participants expressed interest in discussing cognition in clinic.
Cognitive assessment using the NIH Cognitive Toolbox is relevant to this population, with the possible addition of a prospective memory assessment. Cognitive problems and indications of communication gaps suggest the appropriateness of more clinical communication about cognition in the SLE population.
系统性红斑狼疮（SLE）是一种与认知功能下降相关的复杂慢性疾病。SLE 患者会报告认知症状，但在 SLE 中并未常规进行认知评估，对日常认知问题及其对疾病管理的影响知之甚少。作为探索在临床就诊中使用认知功能报告原型进行共同决策的试点研究（探索积极的狼疮患者老龄化的以患者为中心的方法 [APPEAL 研究]）的一部分，我们研究了在 SLE 患者中使用美国国立卫生研究院（NIH）工具箱进行认知评估的相关性。
我们进行了 4 次焦点小组讨论，2 次与 SLE 患者（n=18），2 次与狼疮提供者（医生和护士；n=9），讨论认知问题和对沟通认知的兴趣。我们比较了 NIH 工具箱认知领域（情景记忆、工作记忆、处理速度、注意力和抑制控制、认知灵活性）与患者和提供者确定的认知问题和需求的相关性。
患者用丰富的经验实例识别出了所有 NIH 领域；而提供者识别出的领域较少，提供的细节也较少。一个意外的额外领域是前瞻性记忆（即，未来行动记忆的问题）。一些患者提到了使用技术辅助（例如，智能手机提醒），但提供者没有提到，这代表了医疗保健的潜在机会。所有参与者都表示有兴趣在诊所讨论认知问题。
使用 NIH 认知工具箱进行认知评估与该人群相关，可能需要增加前瞻性记忆评估。认知问题和沟通差距的迹象表明，在 SLE 人群中更需要进行关于认知的临床沟通。
