Assessing Patient Experiences and Priorities in Traumatic Brain Injury Health Care: A Survey Study

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.