Long-term outcomes and health-related quality of life in patients with autoimmune encephalitis: An observational study

Abstract

Autoimmune encephalitis (AE) subacutely causes severe and multiple symptoms; however, most patients achieve neurologically favorable outcomes. Despite the substantial recovery in motor function, persistent impairments in mental/social aspects lasting for several years have been recognized, and its potential effect on health-related quality of life (HRQOL) has been argued. To urgently evaluate the long-term effects of AE on patients’ HRQOL, we investigated patient-oriented long-term outcomes and assessed the HRQOL of patients with AE. Data of patients who were diagnosed with probable/definite AE, defined by Graus AE criteria 2016, and treated at our hospital between January 2011 and October 2020 were retrospectively retrieved. Their long-term (≥2 years) outcomes, which included various sequelae and handicaps in social activities such as returning to previous work/school life through structured interview forms, were evaluated, and the HRQOL was assessed using Neuro-QOL battery. We identified 32 patients who met the Graus AE criteria 2016 and eventually enrolled 21 patients in the study. The median interval between disease onset and survey period was 63 (25–156) months, and 43% of the patients had persistent neuropsychiatric symptoms, including memory disorders, personality changes, and seizures. No more than 71% returned to their previous work/school life. Although most of the patients had global QOL within normal limits, 48% had social QOL under normal limits. Patients with sequelae were significantly less likely to return to previous work/school and had worse global/social quality of life than patients without sequelae. In conclusion, nearly half of patients with AE had social QOL under normal limits 5 years after onset. The difficulty in returning to work/school and a worse HRQOL were notable in patients with sequelae.