Ante-Mortem Clinical Characterization with Post-Mortem Family Interview and Medical Record Abstraction in a Traumatic Brain Injury Brain Donor Program.

Recent investments in large-scale mortem tissue collection have accelerated opportunities to understand the neuropathology of traumatic brain injury (TBI) and post-traumatic neurodegeneration (PTND). Clinicopathological correlation requires ante-mortem clinical information. Post-mortem family interviews (PFIs) are an established method to capture comprehensive ante-mortem clinical information. The aim of this report was to summarize our experience of using the PFI in the Late Effects of TBI (LETBI) brain donor program to facilitate replication, expansion, and refinement of PFI methods in TBI brain donor programs. We describe the content development and structure of the LETBI PFI; interviewer training and qualifications; and considerations regarding interview duration, informant selection, and interview timing, as well as PFI inter-rater reliability. We also compare the information captured in the PFI with data abstracted from the medical records for 34 decedents in the LETBI brain donor program to illustrate the complementarity of these approaches and highlight the unique contributions of the PFI. The PFI can provide granular details about a decedent's clinical history and symptom trajectories over time, potential contributing factors to PTND including social determinants of health (e.g., race and years of education), family history of medical and psychiatric conditions, and contextual information regarding cause(s) of death. The PFI is an important component of a multi-modal autopsy that provides unique insights essential for clinical-pathological correlation investigations of chronic TBI and PTND neuropathology.