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

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 years) completed the NeuroQoL instruments at a median of 50 months (IQR: 18.25–87.50 months) post-disease onset. The median CASE score was 2 (IQR: 0.0–3.0). The median mRS was 1.5 (IQR: 1.0–2.0). In the total AE sample, CASE scores were positively associated with all NeuroQoL domains (r =.42−.53), except Fatigue (r =.28). Total NeuroQoL, Cognitive Function, Satisfaction in Social Roles and Activities, and Stigma T-scores were significantly higher in seropositive AE patients with an mRS > 2 (d = 0.94–1.66). The mRS significantly predicted most NeuroQoL domains in the total AE sample, and the CASE score explained little or no additional variance over and above mRS scores. Similarly, the CASE score was significantly associated with most NeuroQoL domains, with no additional variance explained by mRS scores. Discussion: The relationships between clinician-rated outcomes and domains of quality of life varied from weak to moderate. This highlights the importance of integrating clinical measures and patient-reported outcomes when assessing outcomes post-AE.