Assessing Patient Experiences and Priorities in Traumatic Brain Injury Health Care

Authors

• Temitayo R. Okusanya, Medical College of Wisconsin
• Madeline D. Furie, Medical College of Wisconsin
• Sergey Tarima, University of KentuckyFollow
• Courtney O. Barry, Medical College of Wisconsin
• Terri deRoon-Cassini, Medical College of Wisconsin
• Yuka Kobayashi, Medical College of Wisconsin
• Michael A. McCrea, Medical of Wisconsin
• Kathleen S. Williams, Medical College of Wisconsin
• Staci A. Young, Medical College of Wisconsin
• Lindsay D. Nelson, Medical of WisconsinFollow

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.

Document Type

Article

Publication Date

12-1-2025

Notes/Citation Information

Publisher Copyright: © 2025 Mary Ann Liebert, (NY) LLC.

Digital Object Identifier (DOI)

10.1177/2689288X251404403

Archival?

Archival

Repository Citation

Okusanya, Temitayo R.; Furie, Madeline D.; Tarima, Sergey; Barry, Courtney O.; deRoon-Cassini, Terri; Kobayashi, Yuka; McCrea, Michael A.; Williams, Kathleen S.; Young, Staci A.; and Nelson, Lindsay D., "Assessing Patient Experiences and Priorities in Traumatic Brain Injury Health Care" (2025). Biostatistics Faculty Publications. 95.
https://uknowledge.uky.edu/biostatistics_facpub/95