To identify perceptions of the treatment and recovery continuum following autoimmune and infectious encephalitis.

Encephalitis describes a class of autoimmune and infectious brain diseases that may lead to significant mortality, morbidity and long-term sequelae. There is a paucity of data documenting perceptions about care and outcomes after autoimmune and infectious encephalitis amongst individuals and their caregivers.

Respondents included members of  the Autoimmune Encephalitis Alliance and Encephalitis Society who self-reported as having autoimmune or infectious encephalitis. Participants with a syndrome not consistent with encephalitis were excluded. Participants completed standardized questionnaires and described their experiences with the management of encephalitis in free-text responses. Descriptive statistics were obtained. Inductive thematic analysis and triangulation of quantitative and qualitative data were performed.

225 individuals with encephalitis (mean age 48.09 ± 15.42 years, 73.8% female) participated, 37.8% with autoimmune encephalitis and 46.2% infectious encephalitis. 184 caregivers (mean age 36.55 ± 22.98 years) also responded. Most caregivers were a parent (55.7%) or spouse (27.9%) of a person with encephalitis. Initial misdiagnosis, leading to delayed diagnosis, was a common theme. Cross-verification with the questionnaires indicated 51.6% of individuals with encephalitis and 62.2% of caregivers reported initial misdiagnosis. Additional themes in individuals with encephalitis included knowledge gaps in disease management, problems with memory, difficulties resuming activities requiring mental processing, negative impact on lifestyle, and a deficiency of psychosocial support services. Caregiver themes included elevated stress levels, strained relationships, lack of social support and a sense of uncertainty of the ultimate outcome of the disease.

Our findings suggest that individuals with encephalitis experience long-term cognitive and functional sequelae, and stress amongst caregivers is compounded by the burden of managing the deficits. Identifying care deficiencies following hospital discharge can inform discharge planning and guide the development of interventions to improve long-term outcomes in this population.