Trajectories of Care and Missed Opportunities for Survivors of Severe Acute Brain Injury
Adam Bunker1, Ruth Engelberg2, Mark Harris3, Robert Holloway4, Claire Creutzfeldt5
1University of Washington School of Medicine, 2University of Washington, 3University of California, Irvine School of Medicine, 4University of Rochester Medical Center, 5Department of Neurology, University of Washington, Harborview Medical Center
Objective:
To describe healthcare trajectories and outcomes after severe acute brain injury (SABI).
Background:

Patients who survive SABI (stroke, traumatic brain injury, hypoxic-ischemic encephalopathy) remain at high risk for morbidity, mortality and healthcare utilization. Goals of this study were (1) to better understand care trajectories for SABI survivors including occurrence and factors influencing hospital and Emergency department (ED) readmissions, and receipt of outpatient care; (2) to explore clinician communication with patients and family regarding ongoing needs and treatment preferences in the outpatient setting.

Design/Methods:

We included the hospital survivors of a prospective cohort study that enrolled patients with SABI and GCS <12 between hospital day 2-14. Using surveys, chart review and the multistate ‘ED information exchange’ (EDIE) database, we collected data about rehospitalizations, ED and outpatient visits in the year following SABI. Neighborhood socioeconomic disadvantage was defined by the Neighborhood Atlas’ Area Deprivation Index (ADI). Qualitative analysis of outpatient visit notes focused on goals-of-care conversations.

Results:

Of 222 enrolled patients, 140 survived until discharge. Most survivors were discharged to nursing facilities (39%), inpatient rehabilitation (38%), or long-term acute-care hospitals (11%). Over the ensuing year, they experienced 89 hospitalizations and 104 ED visits without hospitalization; 28 died. Half of survivors (44%, 48/109) had ≤1 inpatient stay and 49% ≤1 ED visit. Patients from the most disadvantaged neighborhoods had significantly higher odds of rehospitalization/ED use within 30 days post-discharge (OR 3.37, p=0.036); there was no association between ADI and 1-year healthcare utilization. Two-thirds of survivors (n=74, 68%) had an outpatient visit within our system, 57% (n=62) were seen by neurology or neurosurgery, 40% (n=44) by primary care. Outpatient conversations rarely revisited prognosis or goals of care.

Conclusions:

Rates of rehospitalization and ED use are high for SABI survivors, and disproportionately so for those from disadvantaged neighborhoods. Long-term goals and prognosis are rarely revisited despite substantial morbidity.

10.1212/WNL.0000000000205472