Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design.
Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design.
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DOI:
10.1097/ccm.0000000000004947
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发表时间:
2021-08-01
影响因子:
8.8
通讯作者:
Creutzfeldt CJ
中科院分区:
文献类型:
--
作者:
Rutz Voumard R;Kiker WA;Dugger KM;Engelberg RA;Borasio GD;Curtis JR;Jox RJ;Creutzfeldt CJ
Treatment decisions following severe acute brain injury (SABI) need to consider patients’ goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients’ goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. Prospective, observational, mixed-methods cohort study. Comprehensive stroke and level-one trauma-center in Pacific Northwest US. Family members of patients with SABI in an ICU for > 2 days and Glasgow Coma Scale score <12. At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semi-structured interviews, examined with content analysis. For 184 patients, most family members set patients’ minimally acceptable cognitive recovery at “able to think and communicate” or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in-hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at “able to think and communicate”, 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed 2 key themes: Families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions. Six months after SABI, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.