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

Abstract

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.

Adult traumatic brachial plexus injury (BPI) is a life-altering event that often leads to a combination of lost physical function, decreased sensation, and substantial neuropathic pain¹. BPI has a broad and pervasive impact beyond physical disability, with substantial emotional and psychological consequences. Patients with a BPI have expressed their discontent with current care delivery, citing the need for earlier referral to BPI teams^2,3; better communication of realistic outcome expectations^3,4; more attention to the emotional aspects of recovery⁵ and to the treatment of pain⁶; and acknowledgment of caregiver needs⁶.

As BPIs are relatively uncommon⁷, patients with a BPI and the caregivers of such patients may turn to social media and patient-advocacy networks to educate themselves about the condition². However, these resources are vulnerable to inaccuracies or may have content that is difficult to understand^2,4,6. To address the need for improved disease-specific education for patients and caregivers, we developed a journey guide, a BPI-specific educational tool, to improve patient engagement and BPI-specific knowledge. The journey guide was developed with use of best practices in health literacy and was based on knowledge gaps that had been identified by patients with a BPI in previous semistructured interviews^2,5. After developing the journey guide, we examined its acceptability among patient advocates with a BPI in the United Brachial Plexus Network. We hypothesized that the journey guide would be acceptable to study volunteers from the BPI community, as measured by satisfaction, intent to utilize, and perceived appropriateness.

Materials and Methods

We conducted a qualitative study in which semistructured interviews were utilized to elicit feedback on the BPI journey guide from patients as well as to collect demographic survey data and survey evaluations of the journey guide. All procedures regarding human subject research were approved by an institutional review board, and all recruitment materials were approved by our institutional review board and the board of directors of the United Brachial Plexus Network. Participant demographic and survey evaluation data were stored on encrypted platforms compliant with the Health Insurance Portability and Accountability Act.

Brachial Plexus Injury Journey Guide

Prior work demonstrated 9 knowledge domains that patients with a BPI indicated would increase satisfaction with treatment: anatomy of the brachial plexus, causes of BPI, symptoms of BPI, types of treatment, realistic outcome expectations, emotional aspects of recovery, treatment of pain, patient-surgeon communication, and caregiver needs².

The journey guide was developed by a multidisciplinary team of health-care and education professionals, including a board-certified orthopaedic hand surgeon, a certified hand therapist, and a medical librarian. The journey guide employs plain-language best practices from the Plain Language Action and Information Network such as the use of simplified language, definition of technical terms, use of active voice, and presentation of the most critical information first⁸. The United States Centers for Disease Control and Prevention (CDC) principles of health literacy—accurate, accessible, and actionable—were considered⁹, along with recommendations for a 6th-grade reading level from the National Academies of Medicine Committee on Health Literacy (previously known as the Institute of Medicine Committee on Health Literacy)¹⁰. To further evaluate understanding and usability, we scored all materials with use of the CDC Clear Communication Index⁹, which is designed for systematic assessment of the clarity and understandability of health education materials. Materials that did not score >90 on the index were edited and improved before sharing with study participants. The version of the journey guide reviewed by participants is included in the Appendix.

Participant Recruitment

Participants were recruited through materials shared on social media by the United Brachial Plexus Network, an organization devoted to providing information, support, and leadership for families and those concerned with brachial plexus injuries¹¹. After the interim analysis, it was noted that many of the United Brachial Plexus Network participants had experienced their BPI many years ago. To address this and to gather perspectives from those who had recently experienced their injury, an additional 5 participants were recruited from the brachial plexus clinic of our institution. To ensure adequate representation of the types of BPIs, we recruited approximately equal numbers of participants with a complete/pan-plexus injury and those with a partial plexus injury. Inclusion criteria were an age of ≥18 years, the cognitive ability to converse and read in English, and a diagnosis of traumatic BPI. Exclusion criteria were birth-related BPI, non-BPI peripheral nerve injury, radiation-related neuropathy, and Parsonage-Turner syndrome. Sample size calculations (as typically utilized in quantitative research) are not utilized for qualitative research. However, consistent with qualitative research principles, our goal was to reach a sample size that would provide an appropriate breadth of perspectives to the point of thematic saturation.

Surveys

Participants completed 3 surveys immediately prior to semistructured interviews. A demographic survey covered age, race, marital status, education, health insurance, employment, and income. The second questionnaire focused on the date of the participant’s BPI, their understanding of the injury, and information sources that they found helpful for living with a BPI. Lastly, an evaluation survey was completed that assessed participant satisfaction with the journey guide and perceptions of the journey guide’s educational usefulness, appropriateness, potential for continued use (at the time of the interview and beyond), and fit for the BPI community. Summary statistics were calculated, but, given that the study sample size was based on the qualitative analysis, we decided a priori not to perform comparative analyses.

Interviews

Semistructured interviews were conducted with each participant either in person, by phone, or over Internet video calls. The interview guide (see Appendix) consisted of 76 questions on topics such as participant knowledge of BPIs and use of other resources, impressions of each section of the journey guide, global ways to improve the guide, appropriate timing and clinical use of the guide, and the usefulness of the guide over time for patients. Interviews were recorded on a secure audio device and transcribed for thematic analysis. Field notes were captured by the interviewer during the interviews, and entries in a reflexive journal were made immediately after the interviews.

Qualitative Analysis

The thematic analysis of interview transcripts consisted of 2 coders independently utilizing a grounded theory framework to inductively identify emerging thematic codes from interviews. Themes were coded with use of a qualitative methods software (Dedoose; SocioCultural Research Consultants). We conducted interim analyses for every 5 interviews coded, at which time the codes were compared, discussed, and reconciled. Following the first 5 interviews, a code book was drafted. Thematic codes were iteratively added to the code book and examined in order to form categories, concepts, and codes. Additionally, field notes and reflexive journals were reviewed to analyze bias. Edits to the interview guide were made iteratively at these time points as well. Recruitment ended when thematic saturation was reached, which was defined as 3 consecutive interviews in which no new codes were identified.

Source of Funding

One author (C.J.D.) received funding from the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health (grant R03 AR077109–01A1) for the present study.

Results

Participants

We recruited 19 participants, of whom 9 (47%) had a pan-plexus injury and 10 (53%) had a partial plexus injury (upper trunk, 7 participants; lower trunk, 3 participants). At the time of the interview, the mean time (and standard deviation [SD]) since the BPI was 12.9 ± 12.2 years (range, 2.0 to 39.7 years). A total of 2 participants (11%) never underwent surgery for the injury. Of the remaining 17 participants (89%), the mean time to the first surgery was 31.7 ± 103.8 months (median, 5 months; range, 0 to 434 months). When excluding 1 patient who had had the first surgery 36 years after the injury, the mean time to the first surgery was 6.6 ± 4.7 months (median, 5 months; range, 0 to 17 months). Demographic data are summarized in Table I.

TABLE I.

Demographic Information for Study Participants

	All Participants	Participants by Type of BPI
		Pan-Plexus	Upper Trunk	Lower Trunk
No.*	19 (100%)	9 (47%)	7 (37%)	3 (16%)
Age† (yr)	44.7 ± 12.9	45.4 ± 12.5	42.4 ± 15.5	47.6 ± 10.7
Sex‡ (no. of participants)
Men	13 (68%)	9 (100%)	3 (43%)	1 (33%)
Women	6 (32%)	0 (0%)	4 (57%)	2 (67%)
Race‡ (no. of participants)
White	16 (84%)	8 (89%)	6 (86%)	2 (67%)
Black	2 (11%)	1 (11%)	1 (14%)	0 (0%)
Native American	0 (0%)	0 (0%)	0 (0%)	0 (0%)
Other	1 (5%)	0 (0%)	0 (0%)	1 (33%)
Highest level of education completed‡ (no. of participants)
High school	1 (5%)	0 (0%)	0 (0%)	1 (33%)
Some college	8 (42%)	3 (33%)	3 (43%)	2 (67%)
Associate’s degree	2 (11%)	1 (11%)	1 (14%)	0 (0%)
Bachelor’s degree	6 (32%)	3 (33%)	3 (43%)	0 (0%)
Master’s degree	1 (5%)	1 (11%)	0 (0%)	0 (0%)
Doctoral degree	1 (5%)	1 (11%)	0 (0%)	0 (0%)
Time from injury to first surgery§ (mo)
Mean ± SD	31.7 ± 103.8	53.2 ± 142.8	6.7 ± 5.3	10.0 ± 5.7
Median	5.0	5.0	5.0	10.0
Range	0.0–434.0	0.0–434.0	2.0–17.0	6.0–14.0
Time from injury to study participation (yr)
Mean ± SD	12.9 ± 12.2	15.5 ± 15.0	10.3 ± 11.9	11.3 ± 5.8
Median	5.0	5.0	3.6	12.3
Range	2.0–39.7	2.0–39.7	2.3–35.1	5.0–16.4

^*Values are given as the count, with the percentage of all participants in parentheses.

^†Values are given as the mean ± SD.

^‡Values are given as the count, with the percentage of the count for that column in parentheses.

^§Values are based on the 17 participants who underwent surgery for their injury.

Survey Results

Survey items were scored with use of a visual analog scale (VAS). Among all participants, the mean VAS score for satisfaction with the journey guide as an educational tool was 8.4 ± 1.6 (median, 8.0; range, 5 to 10). The mean VAS score for expected usefulness of the journey guide if reviewed by a patient at the time of BPI occurrence was rated as 8.7 ± 1.7 (median, 10.0; range, 5 to 10). The mean VAS score for potential for continued use was rated as 7.3 ± 3.3 (median, 9.0; range, 0 to 10). Survey results are summarized in Table II.

TABLE II.

Survey Results^*

	Participant Satisfaction with the Journey Guide	Qualities of the Journey Guide
		Usefulness When First Injured	Potential for Continued Use	Fit for the BPI Community
All participants
Mean ± SD	8.4 ± 1.6	8.7 ± 1.7	7.3 ± 3.3	8.8 ± 1.5
Median	8.0	10.0	9.0	9.0
Range	5.0–10.0	5.0–10.0	0.0–10.0	5.0–10.0
Participants by BPI type
Pan-plexus (n = 9)
Mean ± SD	8.3 ± 1.7	8.7 ± 1.8	6.1 ± 4.2	9.1 ± 0.9
Median	8.0	10.0	6.0	9.0
Range	6.0–10.0	5.0–10.0	0.0–10.0	7.0–10.0
Upper trunk (n = 7)
Mean ± SD	8.7 ± 1.9	9.3 ± 1.0	8.6 ± 1.9	8.7 ± 2.0
Median	10.0	10.0	10.0	9.5
Range	5.0–10.0	8.0–10.0	6.0–10.0	5.0–10.0
Lower trunk (n = 3)
Mean ± SD	8.0 ± 1.0	7.7 ± 2.5	7.7 ± 2.3	8.3 ± 2.1
Median	8.0	8.0	9.0	9.0
Range	7.0–9.0	5.0–10.0	5.0–9.0	6.0–10.0

^*A visual analog scale was utilized for all 4 survey items.

Qualitative Analysis

Qualitative coding largely reflected the positive view of the journey guide found in the survey analysis. Four broad themes emerged: (1) images, graphics, and quotes provide vital clarity across multiple aspects of the journey guide and improve engagement; (2) the journey guide would be most beneficial for patients who recently experienced a BPI; (3) in addition to its use as an informational guide, the journey guide is an effective organizational tool; and (4) it is difficult to orient patients toward future hardships. Themes, subthemes, and representative quotes are shown in Table III.

TABLE III.

Themes, Subthemes, and Representative Quotes from Study Participants

Theme	Subtheme	Quote
Images, graphics, and quotes improve the clarity of information in the journey guide	Illustrations of the brachial plexus help patients to understand BPIs and to communicate their injuries to others	“When I’m reading through, I can refer over, and look at that picture, and then connect the dots in my head. I really like having the little picture. I think having a bigger picture or a couple different diagrams, absolutely.” 22 years old; 4 years since pan-plexus BPI
	The succinct table of diagnostic tests is easily digestible	“I think, is a lot more digestible. I think this is getting closer to the approach that you’ve been talking about in terms of how you want to present the information. I think this is all good.” 28 years old; 4 years since upper-trunk BPI
	Photos of or quotes from real patients adapting to BPI feel more personalized	“I’ve seen people playing guitar instruments or doing activities that show that normal life—the new normal can still go on. I think that is valuable.” 22 years old; 4 years since pan-plexus BPI
The journey guide would be most beneficial for patients recently diagnosed with a BPI	The journey guide would be helpful immediately following diagnosis	“If this had been around when I was first injured and starting to go through this process, it probably would’ve made a lot of things easier.” 42 years old; 5 years since lower-trunk BPI
	The journey guide is less helpful for patients who have been living with a BPI for many years	“I think that being this far out, I probably wouldn’t use it. Where I would use it: as a resource to give to people that are just coming into the injury.” 22 years old; 4 years since pan-plexus BPI
	The journey guide is unique; the most common sources of information are online forums or social media	“I never came across anything like that. Certainly not in my physician’s offices.” 62 years old; 40 years since pan-plexus BPI
	The 5-year recovery timeline helps to set expectations	“It was great…especially the 5-year recovery timeline. Look, like, it’s one of those things that’s a hard pill to swallow.” 53 years old; 20 years since pan-plexus BPI
The journey guide is an effective organizational tool	Areas to record provider names, appointments, treatment plans, etc., are useful	“Maybe a section, maybe it’s 1 page, where you can put, like, “Okay, date of MRI, date of EMG,” and the doctor’s name or something like that, where you could put, “Okay, this is where I had it. This is where I had it, who performed it, and this was the date,” that you could keep a track of who you’ve seen and the tests that you’ve undergone.” 22 years old; 4 years since pan-plexus BPI
	Sections for notes are convenient for many patients	“Knowing my mom and how she’d take notes and processes information, I’m sure she would use those note lines if we were sitting down through a doctor’s appointment.” 22 years old; 4 years since pan-plexus BPI
It is difficult to orient patients toward future hardships	Pain experiences vary widely and can have major effects on daily living	“I think everybody’s situation is so different. I don’t think there’s a complete guide to help you with that.” 52 years old; 35 years since upper-trunk BPI
	Reading about BPI can be daunting	“I think all that information does need to be there, just maybe can be presented in a way that’s—to our point earlier—more digestible to somebody who’s not—somebody who’s already going through something a lot mentally and emotionally.” 28 years old; 4 years since upper-trunk BPI
	Diagnostic tests can be physically and emotionally difficult	“Yeah, those are really mentally terrible because you watch the doctor note the things that aren’t working. That one’s just an emotional one to have done.” 28 years old; 4 years since upper-trunk BPI
	Mental health is an important topic that should be highlighted	“Yes, you’re going through the physical therapies and so forth, and you’re seeing your doctor, and you’re having your tests, but if you’re not taking care of the mental part, I honestly think that’s a major missing link.” 58 years old; 2 years since upper-trunk BPI

The images and engaging page layout played a crucial part in better conceptualizing the pathology of BPI and the diagnostic and treatment work-up required. All participants stated that the illustration of the brachial plexus in the journey guide helped them to better understand their injury and would be helpful in explaining their injury to others. Nearly all participants (16 participants; 84%) noted that they learned something new while reading and engaging with the section on BPI pathoanatomy. Additionally, 15 participants (79%) stated that the table of explanations for diagnostic testing was succinct and that the manner in which it delivered information regarding what could be expected during the test and in the test results was easy to understand.

Conversely, 17 participants (89%) stated that the photographs in the journey guide (which utilized stock photographs) could be better tailored to the BPI community, and 14 of these participants noted that none of the photographs showed patients with a BPI. The most common suggestion for the use of photographs in the journey guide was to demonstrate patients successfully adapting to life with a BPI. Other suggestions brought up by multiple participants were to include visuals of patients with a BPI enjoying activities and to more closely reflect the “journey” aspect of the adjustment following BPI by utilizing visuals with emphasis on landscapes and traveling.

Additionally, all participants stated that the inclusion of encouraging pull-out quotes from other patients with a BPI would improve the impact of the journey guide, primarily by informing new patients of the broader BPI community. Three participants believed that quotes could elevate items on the journey guide that might not seem obvious to new patients, such as the skill set of social workers.

All participants believed that the journey guide would be most helpful when a patient is first diagnosed with a BPI. The note-taking sections regarding injury details and next steps in care included in the journey guide were noted and appreciated by 14 of the 19 participants. All participants stated that the journey guide would hold a unique space in patient education on BPIs as a consolidated, objective, and accurate source of information, in contrast with the variability and potential inaccuracy of online forums and social media.

Lastly, all participants iterated that the variety of injury types and life experiences makes developing educational material for BPIs difficult. Pain was noted by all participants as a central part of life with a BPI, although pain quality and severity differed between participants. With this in mind, nearly all of the participants (17 of 19) found the discussions of pain across multiple sections in the journey guide to be helpful. More than half of the participants (12 of 19) found the tone of the introductory page “How will this injury affect me?” to be negative and suggested editing it to be more encouraging in future drafts. Six participants (32%) stated that the frankness of the introductory page regarding new limitations would help patients begin to focus on how to adjust to functional limitations following BPI. The discussion of 5-year recovery timelines was appreciated by 13 participants (68%) as helpful for framing expectations for recovery. All participants stressed that it is important to normalize seeking mental health treatment and believed that the journey guide could demonstrate this further.

Discussion

For patients with a BPI, the journey guide filled a previously unmet need for a BPI-specific educational resource that includes desired information regarding the diagnosis, the expectations for treatment, and the ways in which the injury affects several domains of a patient’s life. All patients noted that the strengths of the journey guide included the aggregation of relevant information into 1 document, the use of straightforward language, and the use of an accessible page layout. No participants reported past encounters with BPI educational materials that addressed the patient-surgeon relationship, treatment outcomes, caregiver needs, or the emotional aspects of recovery, all of which are included in the journey guide. Such topics have been previously described by patients with a BPI as important areas for education^2,5,12. Our interviews with participants confirmed that patients with a BPI seek information regarding their injury on social media and from other online resources, as has been reported in the literature⁶. Participants agreed that the journey guide would play an important role in providing a reliable source of information for patients with a BPI, with the journey guide addressing concerns that have been brought to light in prior studies regarding the accuracy of patient-accessible information about BPI within social media networks^4,6.

Participants provided suggestions for improving the current version of the BPI journey guide. Nearly all participants requested that the visuals should be changed to better reflect adjustment to life after BPI, with requests for photographs of patients with a BPI rather than stock photography. Participants also noted that the format of the guide should be improved for electronic dissemination and touch screens (they were given an electronic PDF [portable document file] for review). The current version of the journey guide also does not include a description of the broader BPI community that can be found online through the United Brachial Plexus Network or locally through a support group, which can be helpful for new patients. Participants agreed that including quotes from patients with a BPI, with permission, would be helpful.

Our development of the journey guide had limitations. The journey guide was composed on the basis of the experiences of a BPI team from a single academic medical center in the U.S. Although the perspectives and philosophies regarding the many aspects of BPI will vary among BPI teams^13–15, the content in the current version of the journey guide has worked well for educating patients at our center. Future iterations of this journey guide may be better tailored to the approaches of other BPI teams. It is difficult to determine the generalizability of the journey guide given the vast spectrum of experiences with BPI and our use of a sample size of 19 participants, which limited our assessment of the guide. Our recruitment of participants was also prone to selection bias, as patients more likely to have a positive impression of the journey guide were more likely to participate in the study. The analysis of interviews and surveys was also prone to confirmation bias, and participants may have been prone to recency and/or recall bias when evaluating their experiences. Wider dissemination of the journey guide along with invited feedback will aid tremendously in revising the guide for future versions. Future opportunities exist for community-based participatory research through BPI online communities such as the United Brachial Plexus Network.

In conclusion, the patients in our study recognized the need for BPI-specific educational resources and appreciated that the journey guide provided an accessible explanation of a wide range of topics. Future versions of the journey guide should include photography specifically focused on patients successfully adapting to a BPI and quotes that demonstrate the rich community available to new patients, and should utilize formats better suited for electronic dissemination.