Development and Assessment of a Patient “Journey Guide” for Adult Traumatic Brachial Plexus Injury

BACKGROUND: Patients with a traumatic brachial plexus injury (BPI) have previously identified the need for improved patient education tools, emphasizing the importance of communicating outcome expectations, providing attention to the emotional aspects of the injury and the treatment of pain, and acknowledging the needs of caregivers. We created a journey guide, a BPI-specific educational tool, to address these deficiencies. In this study, we determined the acceptability of the journey guide through surveys of and semistructured interviews with patients with a BPI. METHODS: The journey guide was created by a multidisciplinary team focusing on previously defined areas for the improvement of patient education and care delivery related to BPI. To assess the acceptability of the journey guide, we recruited 19 participants from the brachial plexus clinic of our institution and the United Brachial Plexus Network to complete a series of surveys and semistructured interviews. Participants completed surveys regarding their satisfaction with the journey guide, and we conducted semistructured interviews to assess patient BPI experiences and impressions of the journey guide and to seek feedback. Interview transcripts were qualitatively analyzed to determine common themes for improvement. RESULTS: A total of 19 participants with a mean age of 44.7 years were included. The cohort was predominantly male (13 participants) and White (16 participants). The mean time since BPI was 12.9 years, ranging from 2.0 to 39.7 years. On a visual analog scale, satisfaction with the journey guide was given a mean score of 8.4; expected usefulness when a patient is first injured, 8.7; potential for continued use, 7.3; and the fit for the BPI community, 8.8. Qualitative analysis demonstrated a primarily positive view of the guide and identified 4 major themes: (1) visuals and quotes improve clarity and engagement, (2) the journey guide would be most useful immediately following an injury, (3) the journey guide is an effective organizational tool, and (4) it is difficult to orient patients toward future hardships. CONCLUSIONS: The journey guide successfully filled a gap in the current care for BPI and was largely deemed acceptable by patients with a BPI. Specifically, participants found the journey guide to be a concise educational resource and an effective organizational tool. Participants also indicated that areas for improvement include the increased use of graphics and images and recognition of the greater BPI community with which patients can engage.