Brains on Fire: Patient Outcomes and Quality of Life Following Autoimmune Encephalitis

Abstract

Objective To present and improve understanding of patient outcomes and quality of life post-autoimmune encephalitis. Background Patient outcome following encephalitis and in particular following autoimmune encephalitis is not well understood. It is only over the last 15 years that we knew, became able to test for, and identify some of these autoimmune causes of encephalitis and so there currently only a small and emerging literature about patient outcomes. Many papers that talk about or refer to patient outcome look quite early on in the patient pathway and often when they talk about outcome they mean immediate clinical outcome and not how patients are, if they survive, several months or years down the line. Therefore we don't actually have a good handle yet on autoimmune patient outcomes nor their quality of life. Yet, most papers agree that much more needs to be done to assess long-term outcome and quality of life in autoimmune encephalitis patients. One further point of importance is that some complications of AE might not appear until several months or years down the line. Design/Methods Review of the literature accompanied by first-hand patient video testimony providing rich insight into long term outcomes and impact on quality of life post-autoimmune encephalitis. Results Patient outcomes post-AE can be life-changing and in some instances may occur several months and years post-acute illness. These outcomes and quality of life influence how patients understand and make sense of their experience; how they engage with recovery and rehabilitation. A range of poorly understood factors influence patient quality of life post-AE. These include a lack of easily understood index event, lack of community and collective understanding, fears of relapse, post-ICU PTSD, and a lack of accurate information and understanding of their outcomes pre and post-discharge. Conclusions Improved understanding of patient outcomes post autoimmune encephalitis can improve patient care and engagement.