Division of Rheumatology, Department of Medicine, University of California, 4150 Clement Street, Mailstop 111R, San Francisco, CA, 94121, USA.
Center for Vulnerable Populations and Zuckerberg San Francisco General Hospital, San Francisco, CA, USA.
BMC Med Inform Decis Mak. 2024 Oct 12;24(1):302. doi: 10.1186/s12911-024-02696-9.
Outcome measures are crucial to support a treat-to-target approach to rheumatoid arthritis (RA) care, yet their integration into clinical practice remains inconsistent. We developed an Electronic Heath Record-integrated, patient-facing side-car application to display RA outcomes (disease activity, functional status, pain scores), medications, and lab results during clinical visits ("RA PRO Dashboard"). The study aimed to evaluate patient perceptions and attitudes towards the implementation of a novel patient-facing dashboard during clinical visits using a mixed-methods approach.
RA patients whose clinicians used the dashboard at least once during their clinical visit were invited to complete a survey regarding its usefulness in care. We also conducted semi-structured interviews with a subset of patients to assess their perceptions of the dashboard. The interviews were transcribed verbatim and analyzed thematically using deductive and inductive techniques. Emerging themes and subthemes were organized into four domains of the Ecological Model of Health.
Out of 173 survey respondents, 79% were interested in seeing the dashboard again at a future visit, 71% felt it improved their understanding of their disease, and 65% believed it helped with decision-making about their RA care. Many patients reported that the dashboard helped them discuss their RA symptoms (76%) and medications (72%) with their clinician. Interviews with 29 RA patients revealed 10 key themes: the dashboard was perceived as a valuable visual tool that improved patients' understanding of RA outcome measures, enhanced their involvement in care, and increased their trust in clinicians and the clinic. Common reported limitations included concerns about reliability of RA outcome questionnaires for some RA patients and inconsistent collection and explanation of these measures by clinicians.
In both the quantitative and qualitative components of the study, patients reported that the dashboard improved their understanding of their RA, enhanced patient-clinician communication, supported shared decision-making, and increased patient engagement in care. These findings support the use of dashboards or similar data visualization tools in RA care and can be used in future interventions to address challenges in data collection and patient education.
结局指标对于支持类风湿关节炎（RA）治疗的目标治疗方法至关重要，但它们在临床实践中的整合仍然不一致。我们开发了一种电子健康记录集成的、面向患者的侧车应用程序，以便在临床就诊期间显示 RA 结局（疾病活动度、功能状态、疼痛评分）、药物和实验室结果（“RA PRO 仪表板”）。本研究旨在使用混合方法评估患者对在临床就诊期间实施新型面向患者仪表板的看法和态度。
邀请至少在一次临床就诊中使用过该仪表板的 RA 患者完成一项关于其在护理中的有用性的调查。我们还对一部分患者进行了半结构化访谈，以评估他们对该仪表板的看法。访谈记录逐字转录，并使用演绎和归纳技术进行主题分析。出现的主题和子主题组织成健康的生态模型的四个领域。
在 173 名调查受访者中，79%的人有兴趣在未来的就诊中再次看到该仪表板，71%的人认为它提高了他们对疾病的认识，65%的人认为它有助于他们对 RA 护理做出决策。许多患者报告说，该仪表板帮助他们与医生讨论 RA 症状（76%）和药物（72%）。对 29 名 RA 患者的访谈揭示了 10 个关键主题：该仪表板被视为一种有价值的可视化工具，可提高患者对 RA 结局指标的理解，增强他们对护理的参与度，并增加他们对医生和诊所的信任。常见的报告限制包括一些 RA 患者对 RA 结局问卷的可靠性存在担忧，以及医生对这些措施的收集和解释不一致。
在研究的定量和定性部分，患者报告说，该仪表板提高了他们对 RA 的认识，增强了医患沟通，支持了共同决策，并增加了患者对护理的参与度。这些发现支持在 RA 护理中使用仪表板或类似的数据可视化工具，并可用于未来的干预措施，以解决数据收集和患者教育方面的挑战。
