Enhancing Patient Education through a 'Journey Guide' For Adult Traumatic Brachia! Plexus Injury

摘要 在臂丛神经损伤（BPI）中，连接脊髓与肩、臂和手的神经被切断。 损伤，导致灼痛，肌肉功能丧失和感觉缺失。从历史上看， BPI与神经损伤的严重程度（涉及臂丛神经的多少部分）有关。 然而，我们小组和其他人最近的研究表明，其他因素可能会影响 结果和生活质量。在我们的K23工作中，我们正在采访BPI患者和外科医生，以了解 这些心理社会和情感因素对手术后恢复的作用。我们初步的定性分析 表明，患者希望更有效的咨询有关现实的功能结果，情绪 康复方面，以及如何处理伴随BPI的严重神经性疼痛。患者也希望 更深入地了解照顾他们的外科医生所做的某些决定的基本原理，例如时机和 手术干预的类型。这些领域是患者不满意的地方，我们认为它们是 设计干预措施的机会，以教育和赋权患者，最终目标是 提高他们对康复过程的满意度。基于这些发现，我们建议， 提高患者的参与度，了解病情，了解治疗计划将导致 重建BPI后满意度和功能恢复的离散和可测量的改善 手术为此，我们将使用K23访谈数据制定BPI旅程指南，其中我们将解决 K23参与者确定为知识差距的领域（如身体和情感方面） 恢复;功能结局的预期设定;疼痛管理;与医疗保健部门的沟通 照顾者的需要）。我们将遵循卫生知识普及和简明语言的最佳做法，以确保 让病人明白旅程指引。我们将与BPI患者倡导组织（United 臂丛神经网络），让患者志愿者对旅程指南的可接受性进行评分（目标1）。我们将 请BPI外科医生、理疗师、手部治疗师、护士和社会工作者评估可接受性， 旅行指南的准确性（目标2）。这项工作的结果将是一个教育工具， 立即在临床实践中，并广泛分发给BPI患者和卫生保健提供者。而且我们 我计划提交一份未来的R 01提案，以检查其有效性，从而评估套件的有效性 旨在最大限度提高BPI后患者生活质量和满意度的干预措施（包括旅程指南）。

ABSTRACT In a brachial plexus injury (BPI), the nerves connecting the spinal cord to the shoulder, arm, and hand are damaged, leading to searing pain, loss of muscle function, and lack of sensation. Historically, prognosis after BPI has been associated with severity of the nerve injury (how many portions of the brachial plexus are involved). However, recent research from our group and others have demonstrated that other factors may influence outcomes and quality of life. In our K23 work, we are interviewing BPI patients and surgeons to understand the role of these psychosocial and emotional factors on recovery after surgery. Our preliminary qualitative analysis demonstrates that patients desire more effective counseling about realistic functional outcomes, emotional aspects of recovery, and how to deal with the severe neuropathic pain that accompanies BPI. Patients also want more insight into the rationale for certain decisions made by the surgeons caring for them, such as timing and type of surgical intervention. These domains serve as points of dissatisfaction for patients, and we see them as opportunities for designing an intervention for educating and empowering patients, with the ultimate goal of increasing their satisfaction with the recovery process. Based on these findings, we propose that interventions that improve patient engagement, knowledge of the condition, and understanding of the treatment plan will lead to discrete and measurable improvements in satisfaction and functional recovery after reconstructive BPI surgery. To this end, we will use the K23 interview data to develop a BPI journey guide, in which we will address the domains identified by K23 participants as gaps in knowledge (such as physical and emotional aspects of recovery; expectation setting for functional outcomes; pain management; communication with the healthcare team; and caregiver needs). We will follow best practices of health literacy and plain language to ensure that the journey guide is understandable for patients. We will collaborate with a BPI patient advocacy organization (United Brachial Plexus Network) to have patient volunteers grade the acceptability of the journey guide (Aim 1). We will ask BPI surgeons, physiatrists, hand therapists, nurses and social workers to evaluate the acceptability and accuracy of the journey guide (Aim 2). The result of this work will be an education tool that can be used immediately in clinical practice and widely distributed to BPI patients and health care providers. Furthermore, we plan to submit a future R01 proposal to examine the effectiveness of this to evaluate the effectiveness of a suite of interventions (including the journey guide) geared to maximize patient quality of life and satisfaction after BPI.