Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, USA.
Lupus Sci Med. 2021 Feb;8(1). doi: 10.1136/lupus-2021-000476.
To determine whether and how cognitive assessment data should be included in a report for patients with SLE and their providers.
Leveraging experiences from prior studies, we created a cognitive report that included a hypothetical patient's results on tests of multiple domains based on the NIH Toolbox Fluid Cognition Battery. In focus groups that comprised patients with SLE (two groups) and their providers (two groups), feedback was sought on the presentation of results as well as the potential value of the report in the clinical setting.
Feedback regarding the presentation of the report was generally positive. Both patients with SLE and their providers liked its simple graphics and use of a colour-gradated scale to indicate performance. However, both groups stressed the importance of using non-stigmatising language in describing results. Several potential purposes of the report, including distinguishing cognitive versus other issues, explaining cognitive challenges, improving patient-provider interactions, guiding decision-making, improving functioning or preventing impairment and tracking cognitive function over time, were noted by the participants. Potential barriers, such as inadequate clinical staffing or time and lack of potential treatments for identified issues, were also discussed.
In this exploratory study, we found that both patients with SLE and their providers were receptive to the idea of a patient-friendly report of cognitive test results. This study provides important information to guide future pragmatic research to optimise the delivery of cognitive information to patients with SLE.
确定是否以及如何在 SLE 患者及其医护人员的报告中纳入认知评估数据。
利用先前研究的经验，我们创建了一份认知报告，其中包含基于 NIH 工具包液体认知电池的多个领域的假设患者测试结果。在由 SLE 患者（两组）及其提供者（两组）组成的焦点小组中，征求了对结果呈现以及报告在临床环境中的潜在价值的反馈。
关于报告呈现的反馈总体上是积极的。SLE 患者及其提供者都喜欢其简单的图形和使用颜色梯度刻度来表示性能。然而，两组都强调在描述结果时使用非污名化语言的重要性。参与者注意到报告的几个潜在用途，包括区分认知与其他问题、解释认知挑战、改善医患互动、指导决策、改善功能或预防损伤以及随时间跟踪认知功能。参与者还讨论了潜在的障碍，例如临床人员配备不足或时间不足以及确定问题的潜在治疗方法缺乏。
在这项探索性研究中，我们发现 SLE 患者及其医护人员都愿意接受患者友好型认知测试结果报告的想法。这项研究为优化向 SLE 患者提供认知信息的实际研究提供了重要信息。
