Background and ObjectivesAnti-NMDA receptor (anti-NMDAR) encephalitis generally manifests in young adults. Although 80%-90% returns to independence, the majority experience persistent cognitive and psychosocial difficulties. Studies have demonstrated that cognitive recovery may continue for years; the temporal trajectory is largely unknown, as are factors influencing cognitive/ psychosocial recovery. Objectives were to (1) describe the cognitive recovery trajectory, (2) assess self-reported outcomes, (3) identify factors relating to outcome, and (4) explore the relation between cognitive and self-reported outcomes, and participation.
MethodsWe performed a large-scale cross-sectional and prospective cohort study. We addressed our nationwide cohort, provided they were (1) older than 16 years, (2) independent preillness, and(3) able to perform cognitive tests and/or self-report. Patients completed Patient-Reported Outcome Measures and neuropsychological assessments (memory, language, perception and construction, and attention and executive functions), and functional outcomes were established (modified Rankin Scale [mRS] score and return-to-work/-education). Outcomes were compared with references and between groups based on clinical characteristics and functional outcomes (T-tests for normalized data and nonparametric tests for patient-reported data). Recovery was visualized by plotting outcomes against time-of-assessment.
ResultsWe included 92 patients (age 29 ± 2 years; 77% female). Cognitive scores improved with time-ofassessment, up to 36 months after diagnosis (R = 0.35, p = 0.022), with the most enhanced improvement in the first 6 months. This result could be reproduced in prospective patients (n = 12). Beyond 36 months (n = 44), 34% of patients had a persistent impairment (z-score <−1.5 SD) and 65% scored below-average (<−1 SD) in 1 or more cognitive domains, despite a "favorable" outcome measured by mRS (≤2) in the majority (91%). Most affected were memory (mean −0.67 ± 0.89 SD, p = 0.25) and language (−0.75 ± 1.06 SD, p = 0.23). Self-reported complaints remained in emotional well-being (mean 72 ± 25 SD vs norm 82 ± 33 SD, p < 0.001),