"If we want to better help patients’ recovery, we need to broaden the way we evaluate them following treatment for autoimmune encephalitis. Mental health is a critical part of long-term recovery that has long been underappreciated in studies,” says Dr. Julien Hébert, lead author of a new study from UHN’s Krembil Brain Institute (KBI) looking at how to better evaluate mental health outcomes after autoimmune encephalitis (AE).
AE is a serious condition in which the immune system mistakenly attacks the brain, leading to inflammation of brain tissue. This inflammation disrupts normal brain function and can lead to memory problems, changes in mood or behaviour, and psychiatric symptoms such as anxiety or depression.
Although the psychiatric effects of AE are recognized, widely used standards for measuring them have not existed until now. To address this gap, the KBI team compared three patient-completed questionnaires with a structured, clinician-led interview—the Mini Neuropsychiatric Inventory 7.0.2 (MINI)—in 35 individuals recovering from AE.
The study found the MINI identified psychiatric symptoms in 71% of participants, compared with only 23% to 50% when using self-report measures. Adapting the threshold used in these questionnaires to diagnose mental health concerns did pick up more cases, but it came at the cost of decreased accuracy. Among the tools tested, the Profiles of Mood States-2 (POMS-2) questionnaire struck the best balance between accuracy and practicality after adjustments.
The researchers also noted that while the MINI is thorough, it takes much longer to complete than self-report forms. “We must balance sensitivity and specificity with feasibility,” notes the study’s senior author, Dr. David Tang-Wai. “Combining clinician-led and self-report assessments may be the best approach, and refining how we use self-report tools can help ensure fewer patients with psychiatric needs are missed.”
These findings highlight that recovery after AE is not just about regaining physical independence—it’s also about restoring mental health. By closing these gaps, this research lays the groundwork for more timely interventions—helping prevent suffering and improving long-term recovery for survivors.
The first author of this study is Dr. Julien Hébert, a Clinician Investigator at the Krembil Brain Institute and an Assistant Professor in the Temerty Faculty of Medicine at the University of Toronto.
The senior author of this study is Dr. David Tang-Wai, a Clinician Investigator at the Krembil Brain Institute, Co-Director of UHN’s Memory Clinic, a Professor in Neurology and Geriatric Medicine at the University of Toronto, and Division Director of Neurology in the Department of Medicine at the University of Toronto.
Dr. Dilip Koshy also contributed invaluably to this study. Dr. Koshy is a psychiatrist in the Neuropsychiatry Clinic with UHN’s Mental Health Program, and an Assistant Professor in the Department of Psychiatry with the Temerty Faculty of Medicine at the University of Toronto.
This work was supported by UHN Foundation.
Dr. Hébert receives funding from the International Autoimmune Encephalitis Society outside of the work herein. For a list of other competing interests, see the publication.
Hébert J, Gabarin R, Lee S, Koshy D, Day GS, Lapointe S, Climans SA, Muccilli A, Patel PS, Pleshkevich M, Xia D, Steriade C, Tang-Wai DF. Measuring long-term psychiatric outcomes in post-acute autoimmune encephalitis. J Affect Disord. 2025 Jul 27;391:119978. doi: 10.1016/j.jad.2025.119978.