What is an Acceptable Outcome After Acquired Brain Injury? A Comparison of Stakeholder Perspectives

Research Objectives: To characterize and compare patient, caregiver, clinician and investigator perspectives on “acceptable outcome” after acquired brain injury (ABI).

Design: Prospective mixed-methods study using semi-structured interviews

Setting: Virtual interviews

Participants: Two participants from each of the following stakeholder groups: (1) individuals with a history of moderate to severe ABI able to provide informed consent, (2) ABI caregivers, (3) clinicians whose practice includes ABI prognostic counseling and (4) investigators whose research addresses outcome after ABI.

Interventions: Not applicable

Main Outcome Measures: The minimally acceptable outcome (MAO), defined as the greatest level of disability perceived to be tolerable by ABI stakeholders, selected from a list of possible ABI outcomes.

Results: We enrolled two persons with a history of ABI (21 years old, female, 2 years post TBI; 51 years old, male, 18 years post non-TBI; two female caregivers caring for family members 2 and 10 years post-injury; two clinicians (36 years old, female; 33 years old, male); two investigators (60 years old, male; 35 years old, female). The MAO for the patients were recovery of functional communication and independent self-care in home; the MAO for caregivers were recovery of orientation and recovery of consciousness; the MAO for clinicians were recovery of functional communication and no response; the MAO for investigators were death and recovery of consciousness. Constant comparative method analysis of the interview responses revealed the depersonalization of clinician and researcher perspectives when evaluating outcomes, and patients' and caregivers’ strong beliefs in their right to life-sustaining medical treatment.

Conclusions: There was general consistency across all groups in selecting a MAO that represented a greater level of disability than independent self-care in the home, which is a common cut point for favorable outcome. These preliminary data suggest that the patient- and caregiver-centered cut-point for dichotomizing ABI outcome may be lower than the cut-point commonly used in clinical trials. Qualitative interview responses revealed the importance of attending to personal values during prognostic counseling.

Author(s) Disclosures: No conflicts