Abstract Lupus is a complex chronic disease associated with a high prevalence geriatric syndromes and reduced cognitive functioning, consistent with accelerated aging. Although patients with lupus commonly report cognitive symptoms or “lupus fog,” cognitive assessment is not routine and little is known about day-to-day cognitive problems and their effect on chronic disease management. As part of a pilot exploring the use of a cognitive functioning report prototype for shared decision making in clinical encounters (Approaches to Positive Patient-Centered Experiences of Aging in Lupus study), we conducted four focus groups, two with lupus patients (n=18) and two with lupus providers (physicians and nurses; n=9) addressing cognition. We compared how the NIH Toolbox fluid cognition domains (episodic (retrospective) memory, working memory, processing speed, attention and inhibitory control, cognitive flexibility, and overall fluid cognition) matched with patient- and provider-identified cognitive problems and needs. In open questioning using a standard interview guide, patients identified all domains with rich experiential examples; providers identified fewer domains with less detail. An unanticipated additional domain was prospective memory, problems in remembering future actions, whether in the near future (e.g., forgetting what they needed to do on entering a room) or in the not-so-near future (e.g., forgetting about a medical appointment). Technological aids (e.g., smartphone alerts) were mentioned by some patients, but not providers, and represent a potential opportunity for medical care. Providers envisioned using cognitive assessment to distinguish cognitive issues (e.g., forgetting to take medication) from other problems (e.g., medication non-adherence) in order to tailor chronic disease management messaging.
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机译：摘要狼疮是一种具有高患病率老年证和降低认知功能，以加速老化一致相关的复杂的慢性疾病。虽然狼疮患者常见报告认知症状或“狼疮雾，”认知评估不是常规和知之甚少一天到一天的认知问题及其对慢性病管理的效果。作为试点探索利用认知功能报告原型在临床会诊共同决策的一部分（途径阳性患者为中心的经验在狼疮研究老龄化的），我们进行了四个焦点小组，两次与狼疮患者（n = 18 ）和两个与狼疮提供商（医生和护士; N = 9）寻址认知。我们比较了患者 - 和供应商确定的认知问题和需求相匹配的NIH工具箱流体认知域（偶发（回溯）记忆，工作记忆，处理速度，注意力和抑制控制，认知灵活性和整体认知液）如何。在使用标准的面试指南公开质疑，确定患者具有丰富经验的例子所有域;提供商识别更少的域具有较少的细节。一个意想不到的额外域是前瞻记忆，在记忆的未来行动的问题，无论是在不久的将来（例如，忘记他们需要在进入房间做什么），或者在不那么不久的将来（例如，忘记了医疗任命）。技术辅助手段（例如，智能手机的警报）是由一些病人被提及，但没有供应商，并代表了医疗保健的潜在机会。供应商使用认知评估，以区分认知问题设想（例如，忘记服药）其他问题（例如，药物治疗不遵守），以裁缝慢性病管理的消息。
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