Patient and provider perceptions of a novel cognitive functioning report for patients with systemic lupus erythematosus: a qualitative study.
Patient and provider perceptions of a novel cognitive functioning report for patients with systemic lupus erythematosus: a qualitative study.
复制标题
DOI：
10.1136/lupus-2021-000476
复制
发表时间：
2021-03
影响因子：
3.9
通讯作者：
Drenkard C
中科院分区：
文献类型：
--
作者：
Plantinga L;Vandenberg A;Goldstein F;Jones B;Johnson J;Bowling CB;Dunlop-Thomas C;Lim SS;Drenkard C
确定是否以及如何将认知评估数据纳入SLE患者及其提供者的报告中。利用先前研究的经验，我们创建了一份认知报告，其中包括一名假设患者基于NIH液体认知电池进行多个领域测试的结果。在由SLE患者（两组）及其提供者（两组）组成的焦点小组中，寻求对结果陈述以及报告在临床环境中的潜在价值的反馈。对报告提交方式的反馈一般是积极的。SLE患者和他们的供应商都喜欢它简单的图形和使用颜色分级量表来指示性能。然而，这两个群体都强调在描述结果时使用非污名化语言的重要性。参与者指出了该报告的几个潜在目的，包括区分认知与其他问题，解释认知挑战，改善患者与提供者的互动，指导决策，改善功能或预防损伤，以及随着时间的推移跟踪认知功能。还讨论了潜在的障碍，如临床人员配备或时间不足以及缺乏对已确定问题的潜在治疗。在这项探索性研究中，我们发现SLE患者及其提供者都接受了对患者友好的认知测试结果报告的想法。这项研究提供了重要的信息，以指导未来的务实研究，以优化交付的认知信息与SLE患者。
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.
登录
查看更多内容
影响因子：
2.6
作者：
Vogel, A.;Bhattacharya, S.;Jacobsen, S.
通讯作者：
Jacobsen, S.
影响因子：
3.9
作者：
Kabat, MH;Kane, RL;DiPino, RK
通讯作者：
DiPino, RK
影响因子：
5.7
作者：
Bogardus, ST;Towle, V;Inouye, SK
通讯作者：
Inouye, SK
影响因子：
--
作者：
Hanly, John G.;Omisade, Antonina;Fisk, John D.
通讯作者：
Fisk, John D.
影响因子：
4.7
作者：
Plantinga, Laura;Tift, Benjamin D.;Drenkard, Cristina
通讯作者：
Drenkard, Cristina