Abstract
Improving patient experiences and outcomes of traumatic brain injury (TBI) will require understanding patient perspectives of current care systems. Experts have called for building more integrated, patient-centered systems of care to better support patients through stages of TBI recovery. Informed by an earlier qualitative study, we conducted a survey to quantify patient perspectives on discharge and post-discharge experiences across seven hospitals in a single southeastern Wisconsin health system. Eligible participants were English or Spanish speakers and received TBI care between February 2023 and June 2024 at one level I trauma center emergency department (ED) and inpatient unit, two level III trauma center EDs, or four freestanding (non-hospital-based) EDs. Of N = 1,085 patients invited, 321 responded to questions about awareness of TBI diagnosis, discharge instructions, post-discharge treatment experiences, and gaps in follow-up care. Fifty percent of respondents were male, with a median age of 44 years, and 94% were English speakers. Weighted results indicated that 35% of participants were unaware of their TBI diagnosis, 39% desired more follow-up care, and 50% reported still experiencing injury-related symptoms at the time of the survey (Median 94 days [interquartile range 53, 149]). Sociodemographic factors were also associated with some study outcomes: Individuals who were Spanish-speaking reported lower awareness of their TBI diagnosis compared with English speakers (9% vs. 67%, p = 0.001). Additionally, individuals in the highest quartile of neighborhood disadvantage were more likely to desire follow-up care (66%) compared to those in lower disadvantage quartiles (26%–31%; p > 0.001). Moreover, survey outcomes were associated in important ways. For instance, the receipt of a TBI-related handout at discharge was associated with greater awareness of TBI diagnosis (p = 0.003) and better understanding of home care instructions (p < 0.001). Our findings emphasize the urgent need to strengthen follow-up pathways and deliver more patient-centered care that prioritizes effective patient–provider communication, particularly around diagnosis and the provision of TBI discharge education.
Keywords
Introduction
Traumatic brain injuries (TBIs) affect millions of individuals in the United States and globally, posing a significant public health challenge.1–3 Among individuals presenting to level I trauma centers with Glasgow Coma Scale (GCS) 13–15 TBI (historically called “mild”), 4 53% report persistent symptoms and functional impairment 1 year after injury. 5 Yet, despite the high prevalence of TBI, healthcare delivery gaps remain across all severities of TBI. These include missed diagnoses of TBI,6,7 the absence of standardized pathways for follow-up care after emergency department (ED) visits8,9 and limited access to rehabilitative services for individuals with TBI.10,11 Addressing these gaps is critical to improving the continuum of care and enhancing TBI outcomes.
Patient-reported experiences offer a distinctive and valuable perspective on the quality of care, clinical efficacy, and patient safety within health care organizations. These experiences often encompass the sum of interactions patients have within health care institutions and are shaped by the organizational culture that exists within the institution. 12 For instance, providing patients with clear and adequate information about a diagnosis and sharing helpful resources at discharge are evidenced to facilitate the recovery process, increase adherence to medication, ensure proper management of symptoms, and improve clinical outcomes.13,14
Findings from previous studies, including an early qualitative phase of the current study, reveal that many former hospital patients with TBI feel uninformed about their diagnosis, excluded from decision-making, and dissatisfied with the information received about their health at discharge. Addressing these issues is critical. Expert recommendations—including those from the Centers for Disease Control and Prevention (CDC), the American College of Emergency Physicians (ACEP), and the recent panel assembled by National Academy of Sciences, Engineering, and Medicine (NASEM)—highlight the importance of meeting patients immediate care needs and providing them with accurate information to achieve patient-centered care that promotes favorable health outcomes after TBI.1,15
To advance these goals and to develop and disseminate improved systems of TBI care, we recently completed a two-phase study aimed at learning patient perspectives of TBI recovery and health care. As part of an initial qualitative phase, 42 patients, who had either been treated and released from the ED or admitted to our level 1 trauma center, were interviewed. 16 The study identified several important themes of the patient experience, highlighting gaps in routine care. For example, participants conveyed a desire to be better informed about their injury so they could be more engaged in their recovery and care. They expressed the need for more communication from providers about their diagnosis and discharge instructions. We also found variation among participants in difficulties navigating and interacting with the health care system for post-discharge TBI follow-up care. Additionally, social risk and resilience factors were identified as important in patient TBI recovery experiences.
The aim of the current survey study was to verify and extend the understanding of these themes. Specifically, our primary objectives were to estimate the prevalence of different perspectives of TBI health care and gaps in care, with a particular focus on participants’ recognition of their TBI diagnosis, recall of TBI education received at discharge, and experience of follow-up care. Second, we characterized the association between patient factors and these perspectives. These findings will help identify health care improvement priorities from the patient perspective and establish baseline data to be used in tracking the impact of future clinical initiatives. Additionally, should the study find differences in patient perspectives as a function of sociodemographic factors, it would help to design interventions to reduce inequities in care experiences and outcomes.
Methods
Participants
Participants were adults diagnosed and treated with TBI in one of seven hospitals within a single health system in southeastern Wisconsin, comprising 1 level I trauma center, 2 level III trauma centers, and 4 community hospital emergency departments without trauma designation. A clinical informatics tool was used to search electronic health records for eligible participants, and a chart review was conducted to verify eligibility (See Supplementary Data). Inclusion criteria were age 18 years or older, English or Spanish speaking, 1–12 months post-injury, and treated at an eligible hospital with a diagnosis of traumatic brain injury (i.e., a diagnosis of S06.X per the International Classification of Diseases 10th edition). Exclusions were having selected “do not contact” for research in the electronic health record system, known to be deceased, not able to make medical decisions or consent to research (e.g., active health care power of attorney, legal guardian, or psychiatric hold), and other issues that could affect the validity of survey answers or ability to consent. Survey invitations were sent to potential participants from January 2024 to July 2024 for patients having presented to the hospital for initial TBI care between February 2023 and June 2024. Of the 1,085 eligible patients who were sent a survey invitation, 321 (29.6%) responded. Characteristics of individuals who responded and did not respond are in Table 1. The study was approved by the Medical College of Wisconsin institutional review board, and informed consent was provided via an informational letter displayed to participants prior to them starting the survey.
Characteristics a of Sample Clinically Diagnosed with TBI Across Seven Hospitals
an (%); Median (Q1, Q3).
bPearson’s χ2: Rao & Scott adjustment; design-based Kruskal–Wallis test.
cMedicaid/uninsured categories were combined as an estimate of socioeconomic deprivation. Other types of health insurance include, but are not limited to, employer-sponsored insurance, Medicare, and Veteran’s Affair’s insurance.
dOther EDs were two level III trauma center EDs and four freestanding EDs without trauma-level designation.
ED, emergency department; TBI, traumatic brain injury; ADI, area deprivation index.
Invitation procedures
Eligible participants were invited to participate in the survey through three methods: by mail, text message, and/or email invitations. Order of invitation type was randomized, within the available forms of contact provided, and nonrespondents received other invitation types until up to 3 invitations were sent. Mail invitations included an informational letter with a $5 bill advance incentive, a paper survey with a unique subject identifier, and a stamped, addressed return envelope. Email and text message invitations provided a link to the informational letter and survey hosted by REDCap. Participants who participated in the electronic survey received a $5 gift card via mail.
Survey design and content
As the second phase of a mixed-methods study, we designed a 15-item survey that took approximately 5–15 minutes to complete. The survey items were written at a Flesch–Kincaid reading grade level of 7.6 to ensure accessibility to a diverse range of respondents. The survey was designed to examine topics and themes identified in phase 1 of a qualitative study conducted with the same patient population. 16 Specifically, the qualitative study found that persons with TBI were not always aware of their diagnosis, felt under-informed about TBI and what to expect and do after hospital discharge, had difficulties navigating the health care system, and noted the importance of social factors like financial stability and social support during recoveries. The survey was developed by a broad collaborative team comprising researchers, clinicians, health care administrators, and patient-family stakeholders involved in the project, to ensure the survey reflected the lived experiences and used culturally appropriate language. To assure linguistic inclusivity, the survey was translated into Spanish by a fluent Spanish speaker and then back-translated by a native Spanish speaker.
For the present analysis, we focused on 10 items from the survey addressing patients’ discharge and post-discharge experience, following TBI care in the ED.
Given the focus of this article on participants’ opinions of the health care system, analyses centered on questions about awareness of their TBI diagnosis, belief they had a TBI, receipt of a TBI handout at discharge, understanding of home care instructions, receipt of follow-up care, desire for more follow-up care, and current state of recovery. Importantly, the survey was structured so that only participants who endorsed either of the first two items (awareness of their TBI diagnosis or belief that they had experienced a TBI) were presented with the remaining survey items. This conditional structure ensured that subsequent questions were relevant and appropriately targeted. The Supplementary Data provides the survey questions reported on below.
Study variables and demographic context
In addition to the survey outcome variables, we extracted several patient and injury characteristics from the electronic health record. For example, demographic characteristics included sex, age, marital status, ethnoracial identity, and language. The main injury-related variable of interest was the highest level of care, recorded as level I trauma center inpatient unit, level I trauma center ED, or other ED (comprising 2 level III trauma centers and 4 community hospital emergency departments without trauma designation). Socioeconomic variables included health insurance (Medicaid/uninsured vs. Other insurance), employment status, and Area Deprivation Index (ADI) national percentile score. 17
The ADI is a composite measure of neighborhood socioeconomic disadvantage that incorporates data on income, education, employment, and housing quality within Census block groups (geographic units of 600–3000 people, considered the closest approximation to a neighborhood). 18 Developed by the University of Wisconsin’s Center for Health Disparities Research, the ADI supports targeted resource allocation and public health planning. National ADI percentiles range from 0 (least deprived) to 100 (most deprived). 17 For this study, we categorized ADI into three groups (1–49th, 50–74th, and 75–100th percentiles) to account for the possibility of nonlinear effects of ADI on study variables. 19
Statistical analysis
Descriptive statistics were calculated for sociodemographic and clinical characteristics of participants, both overall and stratified by response status (responder vs non-responder groups). Categorical variables were summarized using frequencies and percentages [N (%)], while continuous variables were reported as medians with interquartile ranges (Q1, Q3). To address sparse data issues, categorical variables with cell counts <10 (e.g., low-frequency categories of ethnoracial identity, employment status, and marital status) were combined into broader categories.
Missingness due to survey nonresponse was addressed using inverse probability weighting, while missing responses on select items were treated as missing/unknown. Survey weights were calculated to adjust for potential bias in the respondent pool and to allow generalization of findings to the full sample invited to participate. Specifically, inverse probability weights were derived from a logistic regression model predicting survey response. Predictors included sex, marital status, race, age, ethnicity, ADI, language, health insurance, and level of care. Statistical comparisons between respondents versus non-respondents were calculated using the Rao & Scott adjusted Pearson’s chi-squared test and a design-based Kruskal-Wallis test for both categorical and continuous variables, respectively. These tests are appropriate when computing comparisons across groups using complex survey data that requires weighting. 20
Descriptive statistics, reported as weighted frequencies and percentages [N (%)], were calculated to summarize primary outcomes of respondents’ experiences of their TBI care (knowledge of TBI diagnosis, belief one had a TBI, understanding of TBI information provided at discharge, receiving TBI handout, desiring additional follow-up care for TBI post-discharge, etc.). Because the survey used a branching logic, only participants who endorsed at least one of the two screening questions, i.e., awareness of provider’s diagnosis of TBI or belief they had sustained a TBI, were presented with the follow-up questions about discharge and post-discharge experiences. As a result, analyses of these outcomes are limited to this subgroup, which explains the smaller denominators relative to the full sample of respondents with a clinically documented TBI.
Finally, Rao & Scott adjusted Pearson’s chi-squared test, and Design-based Kruskal–Wallis test were used to examine associations between patient characteristics and patient-reported experiences of TBI care, as well as associations among key care experience outcomes: recognition that provider diagnosed TBI, received TBI handout at discharge, and desired more TBI follow-up care. All analyses were conducted using R statistical software, and p value of <0.05 was considered to indicate statistical significance.
Results
Sample characteristics
Table 1 shows the sociodemographic characteristics of the individuals invited to participate in the study (N = 1,085), as well as the characteristics separately for respondents (n = 321, 30%) and nonrespondents (n = 764, 70%). The full invited sample had a median age of 44 years (IQR = 28, 64), a median time from admission to survey invitation of 94 days (IQR = 53, 149). Half of the invited sample were male (540/1,085; 50%), most were English-speaking (1,025/1,085; 94%) with a minority Spanish-speaking (60/1,085; 6%). The sample was distributed by level of care as follows: 37% Level 1 trauma center emergency department (406/1,085), 35% level 1 trauma center inpatient unit (377/1,085), 28% other emergency department (302/1,085), which included two level 3 and 4 non-trauma-rated emergency departments. Several variables predicted a higher probability of responding to the survey. For example, female sex, older age, having a partner (spouse or significant other), English-speaking, higher neighborhood socioeconomic position, and health insurance other than Medicaid were positively associated with responding to the survey. Weighting successfully adjusted sample characteristics to match the invited sample (Table 1), and all results reported below incorporated inverse probability weights.
Prevalence of TBI diagnosis, discharge, and follow-up care experiences
As shown in Table 2, 65% (weighted proportion n/N = 694/1,061) said their health care provider told them they had a concussion or TBI (versus 23% [247/1,061] who responded “no” and 11% [120/1,061] “don’t know”), and 78% (826/1,059) of participants believed they had experienced a concussion or TBI. Overall, 79% (852/1,066) of the sample endorsed at least one of the two screening questions (awareness of a clinical diagnosis of TBI and/or a belief they had TBI) and were subsequently asked the rest of the survey questions (Table 2). Therefore, sample sizes for other outcomes are smaller because of the survey’s branching logic.
Patient-Reported Traumatic Brain Injury Diagnosis, Discharge, and Follow-up Care Experiences
aParticipants who endorsed at least one of two TBI screening questions (awareness of clinical TBI diagnosis; belief that they had sustained a TBI) were asked the follow-up questions.
TBI, traumatic brain injury.
Among participants who identified as having a TBI (either through provider diagnosis or personal belief), 82% (648/794) said they received a handout with information about concussion or TBI at discharge, 80% (631/794) understood their home care instructions given at discharge, 57% (443/776) received follow-up health care for concussion/TBI after discharge, 39% (299/770) desired more follow-up with a health care provider for their TBI, and 50% (391/785) reported they were still having problems due to injury at the time of the survey (Table 2).
Association between patient characteristics and TBI discharge and post-discharge experiences
Participants who reported being told they had a clinical diagnosis of TBI by their provider (65%, versus 35% “no” or “don’t know”) differed significantly by primary language (Table 3). Specifically, 67% (691/1,030) of English-speaking participants reported being told they had a clinical diagnosis of TBI versus 9% (3/31) of Spanish-speaking patients (p = 0.001). Although type of health insurance also displayed a significant association with this outcome (p < 0.001), follow-up tests demonstrated that this effect was driven by the subgroup with Unknown insurance (4% [2/49]); Medicaid/uninsured (64%; [265/413]) versus Other insurance (71% [426/598]) p = 0.376.
Association Between Participant Characteristics and Survey Diagnosis, Discharge, and Follow-up Care Outcomes
an (%); Median (Q1, Q3).
bWeighted subgroup n refers to participants who endorsed at least one of two TBI screening questions: awareness of clinical TBI diagnosis or belief that they had sustained a TBI.
cPearson’s χ2: Rao & Scott adjustment; Design-based Kruskal Wallis test.
DK, don't know; ED, emergency department; TBI, traumatic brain injury; ADI, area deprivation index (national percentile score).
Recall of receiving a handout with information about concussion or TBI at discharge was associated with younger age (Med [IQR] = 39 [23, 60] “Yes” versus 56 [37, 72] “No,” p = 0.023). Desire for additional follow-up with a health care provider for TBI was associated with both ethnoracial identity (p = 0.020) and neighborhood disadvantage (p > 0.001). Non-Hispanic Black individuals (63% [133/212]) reported the highest rates of desiring additional follow-up care for TBI post-discharge (versus 26%–30% White [150/501], 15%–39% other ethnoracial groups [16/58]). Similarly, individuals in neighborhoods with the highest disadvantage (75–100th percentile) more often wanted additional follow-up care (66% [141/213]) with a health care provider for TBI, compared to those in the lowest (1–49th percentile: 26% [85/321]) and middle (50–74th percentile: 31% [70/225]) disadvantage groups.
Beyond the associations reported above, no other significant associations were found between other patient characteristics (sex, marital status, employment status, etc.) and TBI discharge and post-discharge experiences (Table 3).
Associations of patients’ discharge and post-discharge experiences
Table 4 details bivariate associations of patients’ discharge and post-discharge experiences by key survey outcomes (receipt of TBI handout at discharge, desire for more follow-up with a health care provider for TBI, and understanding home care instructions provided at discharge). Several significant associations were observed. Having gotten a handout was more common among people who recalled (87% [559/646]) versus didn’t recall (51% [31/61]) getting a TBI diagnosis by the discharging provider (p = 0.003). Similarly, 86% (552/645) of participants who received a handout at discharge understood their homecare instructions compared to 54% (78/145) who did not receive a handout at discharge (p < 0.001).
Bivariate Associations of Key Survey Outcomes Among Participants Who Endorsed at Least One of Two TBI Screening Questions a
aAmong 852 Participants who endorsed at least one of two TBI screening questions: awareness of clinical TBI diagnosis or belief that they had sustained a TBI, 794 (=146 + 648) replied on receiving TBI handout, 794 (=163 + 631) replied on understanding home care instructions and 770 (471 + 299) replied to the question if they desire an additional follow-up care for TBI (all weighted frequences).
bn (%).
cPearson’s χ2: Rao & Scott adjustment.
TBI, traumatic brain injury.
Additionally, among participants who recalled getting a TBI diagnosis at discharge, 83% (536/645) understood their home care instructions compared to 50% (30/60) who reported they did not receive a TBI diagnosis (p = 0.030).
Finally, participants who were still having injury-related problems at the time of the survey were more likely to wish they had more follow-up care (66% [196/363] vs. 13% [102/332] of those who were no longer having injury-related problems; p < 0.001).
No other clinical experience variables were associated with the outcomes of interest (Table 4).
Discussion
In this retrospective cross-sectional survey study of adults treated for diverse TBIs at one of seven hospitals within a single U.S. health system, participants reported varied awareness of their TBI diagnosis and post-discharge experiences. Despite all participants having a clinical diagnosis of TBI, we found a high rate of unrecognized TBI among study participants, with 35% of participants not recalling being told they had TBI by a health care provider. Furthermore, among those who identified as having had a TBI (either by recall of provider diagnosis or personal belief), 18% reported not receiving a TBI handout at discharge, and 20% reported not understanding home care instructions provided at discharge. The low recall of TBI diagnosis among participants in our study has serious implications, as patients who are unaware of their condition may be less able to engage in effective self-care practices, potentially hindering their recovery.
We also observed disparities in patients recall of providers’ TBI diagnosis. Patients were substantially less likely to recall that their provider diagnosed them with concussion/TBI if they were Spanish-speaking (9% vs. 67% English-speaking). This observed language-based disparity among participants may be related to several factors. Although surveys and recruitment were done in both English and Spanish, communication within the ED may have been less effective, inconsistent, or more abbreviated for Spanish speakers due to the fast-paced ED setting and the time involved in translation.21–24 Additionally, our health system does not assign in-person Spanish interpreters to the ED. As a result, Spanish-speaking patients likely had limited access to on-site interpretation and instead relied primarily on automated or remote translation systems. 22 All these factors may have contributed to lower understanding or recall of diagnosis. These gaps highlight structural communication barriers within health care systems that disproportionately affect non-English speakers.25,26 Given that previous research has shown that improved patient–provider communication enhances patient satisfaction, diagnostic awareness, and adherence to post-discharge care guidelines,22,23 our findings underscore the need for more patient-centered TBI care systems that prioritize clear, patient-centered, and timely communication in the ED between patients and providers to address existing gaps and support patients’ engagement in their treatment.
Furthermore, patients’ recall of receiving a TBI handout at discharge was associated with age (median: 39 years). Since our study relies on patients’ ability to remember their care experiences, this finding suggests that younger to middle-aged adults may have better recall than older adults. This aligns with research on age-related differences in recognition memory, 27 and time elapsed between last ED visit and the time of survey response. Additionally, given that older patients are less likely to use online patient portals (e.g., MyChart),28–30 where diagnostic and home care instructions are often recorded, the low recall of TBI diagnosis and receipt of discharge handout among older patients may reflect limited access to or low uptake of this digital resource within this age group. Additionally, elderly patients with TBI are often supported in the ED by a caregiver31,32 who may receive the TBI educational handout on their behalf.
Previous studies highlight that providing post-discharge education, such as written notes or informational handouts, improves care satisfaction, supports recovery, and leads to better outcomes after TBI.33,34 In our study, patients who recalled receiving a TBI handout at discharge were more likely to know they were diagnosed with TBI and to understand their discharge instructions. These findings highlight the need for more tailored TBI care and discharge education processes that accommodate individuals of varying ages, specifically older individuals with cognitive and support needs, ensuring that both patients and their caregivers are fully informed about post-TBI care management. When patients understand their diagnosis and discharge instructions, they are better positioned to manage their recovery and adhere to care guidelines.
Half of the participants in our study reported still having injury-related problems at the time of the survey (average 3 months post-injury). Additionally, 57% had seen a health care provider for concussion/TBI care after initial discharge from the ED, and 39% desired additional follow-up care for TBI. This high proportion aligns closely with data from a multicenter study in which 38% of participants desired follow-up care post-discharge. 34 As expected, the desire for more follow-up care was associated with still having injury-related problems at the time of the survey.
We also found that the desire for more follow-up with a health care provider for TBI was associated with sociodemographic factors like neighborhood socioeconomic disadvantage (ADI) and ethnoracial identity. Individuals within the highest national quartile of neighborhood deprivation were over 2x as likely to desire more follow-up care for their injury. This is consistent given evidence emphasizing the role of social determinants of health factors like employment, food insecurity, housing, etc., and their implications on quality of life, health outcomes, and overall functioning. 35
In addition, individuals identifying as Non-Hispanic Black also reported a higher rate (63%) of desire for additional follow-up care than other ethnoracial groups in our sample. This finding may reflect persistent inequalities in health care access, communication, and quality of care that disproportionately affect Black communities.36,37 As a result, these individuals may be more likely to perceive unmet needs during their initial ED visit, prompting a stronger desire for follow-up care. Together, these findings highlight the need for TBI systems of care that extend beyond clinical treatment to address the socioeconomic and structural factors that shape access to care and recovery outcomes.38,39
Our results further highlight critical gaps in TBI care and management post-discharge, with significant implications on quality of life and general functioning. TBI is a debilitating medical condition, and when not carefully managed, it can lead to lifelong disability and adversely impact quality of life.39–41,42 Therefore, our findings are of critical importance to ongoing collaborative efforts towards improving TBI outcomes, including through the work of the National Academies of Sciences, Engineering and Medicine TBI Action Collaborative (NASEM). 1
Because previous research shows that effective patient–provider communication enhances patient satisfaction, diagnostic awareness and adherence to post-discharge care guidelines,21,22 our findings underscore the need for more patient-centered TBI care systems that prioritize clear and timely communication in the ED between patients and providers to address existing gaps and support patients’ engagement in their treatment. Finally, while several individual and non-clinical factors impact TBI recovery after ED discharge,43,44 our results reveal an opportunity for increased education of patients and their caregivers about their diagnosis and care process in the ED before discharge. Further research focused on assessing and improving the content of education provided to patients before ED discharge is needed.
Limitations
This study had several limitations. Our analysis included patients from a single health care system in southeastern Wisconsin; therefore, findings may not generalize to other health systems. Because our study was retrospective and reliant on participants’ ability to recall their TBI care experiences, the findings are subject to recall bias. Additionally, although recruitment was done among both English- and Spanish-speaking participants, our study had limited engagement among Spanish-speaking participants, making findings for this group preliminary. Despite these limitations, our study had a robust sample size, utilized diverse recruitment methods to maximize response rates, and deployed survey weighting to support the generalizability of findings to our health systems’ TBI population. Furthermore, our study was conducted among seven hospitals; therefore, the multi-center nature of our study increases diversity in care settings, care experiences, and patient population.
Conclusion
This study, conducted in Wisconsin acute care settings, highlighted diverse and often inequitable discharge experiences of TBI patients, with implications for broader U.S. acute care settings. Sociodemographic factors such as language, ethnoracial identity, and neighborhood-level socioeconomic disadvantage were associated with patients’ awareness of their TBI diagnosis and their perceived post-discharge needs. The high percentage of patients who were unaware of their TBI diagnosis is especially concerning, as it could limit self-efficacy to manage one’s injury, hinder recovery, and contribute to unnecessary return visits to the ED, exacerbating both patient burden and health care strain. These findings underscore the critical need to improve patient–provider communication in the ED, and the implementation of more patient-centered discharge processes, particularly for socioeconomically disadvantaged populations. Addressing these gaps is essential to improving patient outcomes and advancing TBI care delivery.
Transparency, Rigor, and Reproducibility Summary
The study was not formally preregistered. The article reports on part of the data collected for Phase 2 of a two-phase mixed-methods study. The overall goal of the study was to learn patient/family perspectives of TBI care that could be used to design patient-centered clinical initiatives within the health system. Phase 1 conducted a qualitative study to learn themes of the patient/family experience; these findings have been previously published (doi: 10.1016/j.mayocpiqo.2025.100630). The current Phase 2 survey study aimed to determine the prevalence of unmet clinical and community needs of persons with TBI and examine socio-ecological factors contributing to unmet needs. The content of the survey was developed based on the Phase 1 themes. The study design aimed to invite 1050 individuals to participate, a number selected based on feasibility and statistical power considerations (e.g., to detect reasonably sized associations between categorical and continuous variables and reported unmet needs).
A total of 1085 eligible patients were sent a survey invitation between January 2024 and July 2024; 321 responded. Inverse probability weighting was performed to adjust for differences between respondents and non-respondents and to enable generalization of findings to the broader patient population. Participants provided implied informed consent by viewing an informational letter prior to completing the survey. All surveys and questionnaires used for data collection are available from the authors. Surveys were administered using a secure online data collection tool (RedCap) or via mail. Investigators carefully inputted mail survey responses into RedCap, and all data entered were peer-reviewed to ensure accurate data entry. Data were labeled using auto-generated study identification numbers, and analyses were performed on a coded dataset using R statistical software. The study protocol is available at https://www.mcw.edu/departments/neurosurgery/research/nelson-lab/resources under “Leveraging Patient and Family Perspectives…” For questions about other study materials or the data, please contact the corresponding author.
Authors’ Contributions
L.D.N., S.T., and T.R.O. had full access to all the data used in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. T.R.O.: Writing—original draft (lead), conceptualization (supporting), data curation (supporting), formal analysis (equal), software (supporting). M.D.F.: Data curation (supporting), investigation (lead), writing—review and editing. S.T.: Formal analysis (equal), software (lead), writing—review and editing. C.O.B., T.d-C., and K.S.W.: Methodology (supporting), writing—review and editing. L.D.N.: Conceptualization (lead), formal analysis (supporting), software (supporting), writing—original draft (supporting), supervision (lead), validation (lead), funding acquisition (lead).
Footnotes
Acknowledgment
The authors thank the community advisors for their feedback during this project, including: Lynn Depies, MSW, CAPSW; Jamie Dix, MS, OTR/L; Diane Ehn, MS; Jenna Haberkorn, MS, CCC-SLP; Anne Jurenec, MS; Yuka Kobayashi, DO; LeeAnn Lathrop, MSW, LCSW; Noah Tobes, MSW, LICSW; and Michelle Wesline, RN.
Author Disclosure Statement
The authors have no direct conflicts of interest with this article. L.D.N. reports research and salary support for this work from the Medical College of Wisconsin Advancing a Healthier Wisconsin Endowment. Additionally, L.D.N. reports research funding for other research from the U.S. Department of Defense, U.S. Centers for Disease Control and Prevention, National Institute of Neurological Disorders and Stroke, and the Medical College of Wisconsin Advancing a Healthier Wisconsin Endowment, as well as consulting income from Resolys Bio, Inc.
Funding Information
The study was funded by the Medical College of Wisconsin Advancing a Healthier Wisconsin (AHW) Endowment. The REDCap electronic survey tool and database was supported by the National Center for Advancing Translational Sciences, National Institutes of Health (NIH) grant # 2UL1TR001436. The content is solely the responsibility of the authors and does not necessarily represent the official views of AHW or the NIH.
Supplemental Material
Abbreviations
References
Supplementary Material
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