Exploration of patient- and relative-reported outcomes of cognitive, emotional, and social function after encephalitis

Objective: We evaluated cognitive, emotional, and social function after encephalitis, as perceived and reported by individuals post-encephalitis and their relatives. Hypothesis: There will be differential effects on various domains as self-reported by individuals post-encephalitis. Outcomes will be worse than in prior studies of other forms of acute brain injury. Post-encephalitis relative-report will demonstrate worse outcomes than self-report. Methods and Procedures: Members of The Encephalitis Society residing in the United Kingdom and Ireland were recruited to complete a demographic questionnaire and the European Brain Injury Questionnaire (EBIQ). Results: 266 individuals affected by encephalitis and 140 relatives participated in this study. The three domains with the highest (worst) mean scores were somatic, cognitive, and communication (p < .001). Individuals post-encephalitis self-reported worse outcomes than individuals post-stroke in seven of nine domains (p < .005), but there were no differences compared to individuals post-traumatic brain injury (TBI). Relatives reported worse encephalitis outcomes in seven of nine domains than did individuals directly affected by encephalitis (p < .005). Conclusions: Individuals affected by encephalitis experience the most significant symptoms in the somatic, cognitive, and communication domains. Outcomes as assessed by relatives were notably worse than those assessed by individuals themselves in nearly all domains.