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

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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.