Whose Outcome Is It Anyway? A Person-centered Approach to Conceptualizing Outcome After Severe TBI

Research Objectives: To identify outcomes perceived to be acceptable by persons with severe traumatic brain injury (sTBI) and caregivers, and to identify values and beliefs that contribute to decision-making after TBI.

Design: Cross-sectional, crowdsourcing web-based survey disseminated via Prolific to persons with sTBI and caregivers; participants responded to questions about the acceptability of TBI recovery milestones and values they consider to be important when making medical decisions.

Setting: Community

Participants: Among 145,000 active Prolific users, we enrolled two cohorts: 1) persons who required at least some assistance with basic activities due to a prior TBI (N=253, 29% male, 67% female, 2.4% other, mean [SD] age 40 [12] years; 13.0 [12] years since TBI), and 2) Caregivers, persons who endorsed providing assistance with basic activities for someone with TBI (N=259; 44% male, 56% female, 42 [12] years of age).

Interventions: Not applicable

Main Outcome Measures: TBI recovery milestone endorsed as the “minimally acceptable outcome” (MAO).

Results: The MAO’s selected most frequently by persons with TBI were: Alive, but unconscious (14%), Conscious, but not communicating (26%), Recovery of basic communication (21%), and Partial independence in the home (18%). These MAO’s were also selected by 21%, 20%, 22%, and 16%, of caregivers, respectively. Recovery milestones ranging from complete independence in the home to full recovery were endorsed as MAO’s by 5% or fewer persons with TBI and caregivers. More than 75% of persons with TBI rated patient’s quality of life after injury and long-term pain and suffering as “very important” for decision-making following TBI. Conversely, more than 25% of persons with TBI reported that the doctor's and caregiver's beliefs and values, the patient’s involvement, wisdom, experience, and respect in their community and the patient’s financial well-being to be “not important”. Among caregivers, more than 75% rated the patient’s long-term pain and suffering as “very important. Conversely, more than 25% reported the doctor's beliefs and values and the patient’s involvement in their community as “not important”.

Conclusions: Persons with TBI and caregivers report that a key recovery milestone after TBI, and an acceptable outcome for over 50% of respondents, is the return of basic communication (responding correctly to simple yes/no questions). Recovery of partial independence (unable to be left home alone) was an acceptable outcome for nearly all respondents. This finding challenges conventional wisdom on what constitutes a favorable outcome following TBI. Clinicians should consider discussing these values during prognostic counseling and especially when making decisions regarding withdrawal of life-sustaining treatment.

Author(s) Disclosures: No known author COI