Mental health outcomes of encephalitis: An international web‐based study

AbstractBackground and purposeAcute encephalitis is associated with psychiatric symptoms. Despite this, the extent of mental health problems following encephalitis has not been systematically reported.MethodsWe recruited adults who had been diagnosed with encephalitis of any aetiology to complete a web‐based questionnaire.ResultsIn total, 445 respondents from 31 countries (55.1% UK, 23.1% USA) responded. Infectious encephalitis constituted 65.4% of cases, autoimmune 29.7%. Mean age was 50.1 years, 65.8% were female, and median time since encephalitis diagnosis was 7 years. The most common self‐reported psychiatric symptoms were anxiety (75.2%), sleep problems (64.4%), mood problems (62.2%), and unexpected crying (35.2%). Self‐reported psychiatric diagnoses were common: anxiety (44.0%), depression (38.6%), panic disorder (15.7%), and posttraumatic stress disorder (PTSD; 21.3%). Severe mental illnesses such as psychosis (3.3%) and bipolar affective disorder (3.1%) were reported. Self‐reported diagnosis rates were broadly consistent with results from the Psychiatric Diagnostic Screening Questionnaire. Many respondents also reported they had symptoms of anxiety (37.5%), depression (28.1%), PTSD (26.8%), or panic disorder (20.9%) that had not been diagnosed. Rates of psychiatric symptoms did not differ between autoimmune and infectious encephalitis. In total, 37.5% respondents had thought about suicide, and 4.4% had attempted suicide, since their encephalitis diagnosis. More than half of respondents (53.5%) reported they had no, or substandard, access to appropriate mental health care. High rates of sensory hypersensitivities (>75%) suggest a previously unreported association.ConclusionsThis large international survey indicates that psychiatric symptoms following encephalitis are common and that mental health care provision may be inadequate. We highlight a need for proactive psychiatric input.