• Natalie L Smith, Adrienne James, Nassim Matin, Christine T Fong, Monisha Sharma, Abhijit V Lele, Chiara Robba, Nicole Mazwi, Diana B Wiseman, Robert H Bonow, Erin K Kross, Claire J Creutzfeldt, James Town, and Sarah Wahlster.
• Department of Neurology, Harborview Medical Center, University of Washington, Seattle, WA, USA. ns3824@cumc.columbia.edu.
• Neurocrit Care. 2024 Nov 19.

BackgroundLong-term outcomes of patients with severe acute brain injury (SABI) and their surrogate decision makers (SDMs) are insufficiently explored.MethodsWe conducted a prospective, single-center, observational study of patients with SABI who required mechanical ventilation between September and November 2021. Two telephonic interviews were conducted at 6-12 months and 18-24 months post SABI. Patients' functional outcomes at both time points were measured on the Glasgow Outcome Scale-Extended and categorized as dead (1), dependent (2-4), or independent (5-8). SDMs were interviewed at 18-24 months using validated screening tools for depression, anxiety, and posttraumatic stress disorder and qualitative questions about the hardest challenges during their recovery journey.ResultsWe included 103 patients (median age 58 years, 28% female, 77% White, 51% with stroke, 49% with traumatic brain injury); in-hospital mortality was 46%. At 6-12 months and 18-24 months, 34% and 36% were independent, respectively; the Glasgow Outcome Scale-Extended score improved ≥ 1 point for 32% between time points. Quality of life was perceived as acceptable for 47% of all survivors and 58% of independent patients by their SDMs. At 18-24 months, we reached 56 SDMs (median age 58 years, 71% female, 72% White). Symptoms of depression, anxiety, and posttraumatic stress disorder were reported in 18%, 30%, and 7%, respectively (23%, 34%, and 9% in the 35 SDMs of survivors and 10%, 24%, and 5% in the 21 SDMs to deceased patients). Main themes about challenges for patients and SDMs included extrinsic factors related to the health care system, and intrinsic factors related to the brain injury: difficulties in adapting to a new state, mental health symptoms, and social isolation.ConclusionsMental health symptoms among SDMs of patients with SABI were frequent at 18-24 months, and the patients' quality of life was deemed unacceptable for 42% of SDMs to independent survivors. Our findings underscore the need for psychosocial support to SDMs, the importance of addressing modifiable barriers to patient and SDM well-being, and the need for more patient/family-centric outcome measures.© 2024. Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.

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