The relationship between patient-reported quality of life and clinician-rated outcome scores in patients with autoimmune encephalitis: a study of the Australian Autoimmune Encephalitis Consortium.

ABSTRACT:

Background

Patients with Autoimmune Encephalitis (AE) commonly report poor quality of life. There is a lack of evidence on whether clinician-rated outcome measures adequately capture patient-reported experiences. This study aimed to characterise long-term quality of life in AE patients and examine its relationship with clinician-rated disability (modified Rankin Score, mRS) and symptom severity (Clinical Assessment Scale in Autoimmune Encephalitis, CASE).

Methods

Patients with AE were recruited through the Australian Autoimmune Encephalitis Consortium Project. Patients with completed NeuroQoL instruments, as well as CASE and/or mRS scores within 6 months of the NeuroQoL were included.

Results

Fifty-four patients with AE (50% female, median age at symptom onset = 49.70

SUBMITTER: Kazzi C 

PROVIDER: S-EPMC12689736 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature