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.