A. Karabukayeva, PhD, Health Administration and Policy, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;
L.R. Hearld, PhD, Department of Health Services Administration, School of Health Professions, University of Alabama at Birmingham (UAB), Birmingham, Alabama.
J Rheumatol. 2024 Aug 1;51(8):798-803. doi: 10.3899/jrheum.2023-1178.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with a wide spectrum of clinical manifestations. A decision aid (DA) for SLE was developed and implemented in 15 rheumatology clinics throughout the United States. This study explored the experiences of patients who viewed the DA to understand how patients engage with and respond to the SLE DA.
We conducted a qualitative descriptive study using semistructured interviews with a convenience sample of 24 patients during May to July 2022.
Patients recognized the value of the SLE DA in providing general knowledge about SLE and different treatment options. However, patients expressed a desire for more comprehensive lifestyle information to better manage their condition. Another theme was the importance of having multiple formats available to cater to their different needs, as well as tailoring the DA to different stages of SLE.
This study contributes to a broader understanding of how to provide patient-centered care for patients with SLE by offering practical insights that can inform the development of more effective, patient-centric health information technologies for managing chronic diseases, ultimately improving patient outcomes. Overall, this study underscores the significance of optimizing both the information content and determining the appropriate delivery of the tool for its future sustainability.
系统性红斑狼疮（SLE）是一种慢性自身免疫性疾病，临床表现广泛。我们在美国的 15 家风湿病诊所开发并实施了一种系统性红斑狼疮决策辅助工具（DA）。本研究通过对观看 DA 的患者进行探索性研究，以了解患者如何参与并对 SLE DA 做出反应。
我们采用定性描述性研究方法，于 2022 年 5 月至 7 月期间使用便利抽样法对 24 名患者进行了半结构式访谈。
患者认识到 SLE DA 在提供有关 SLE 和不同治疗方案的一般知识方面具有价值。然而，患者表示希望获得更全面的生活方式信息，以更好地管理病情。另一个主题是提供多种格式以满足不同需求的重要性，以及根据 SLE 的不同阶段调整 DA 的重要性。
本研究通过提供实用的见解，为如何为 SLE 患者提供以患者为中心的护理提供了更广泛的理解，这些见解可以为开发更有效、以患者为中心的管理慢性病的健康信息技术提供信息，最终改善患者的结局。总体而言，本研究强调了优化工具的信息内容和确定适当的工具传递方式对于其未来可持续性的重要性。
