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

Abstract

Background 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.

Clinical Outcome Assessments in Encephalitis

“…Other generic patient-reported tools addressing HRQoL or the impact of illness in patients with encephalitis and encephalopathy are sporadically described in articles: Quality of Life after Brain Injury–Overall Scale in 3 anti-NMDAR encephalitis patients, 40 the Nottingham Health Profile in patients with hepatic encephalopathy, 27 and the Lancashire Quality of Life Profile and Brief Illness Perception Questionnaire in patients with any form (infectious or inflammatory) of acute encephalitis. 3 , 41 Two studies have applied, however not formally validated, PROMIS (Patient-Reported Outcome Measurement Information System) tools for measuring HRQoL 42 and the impact of illness 43 in patients with hepatic encephalopathy and anti-NMDAR encephalitis, respectively. PROMIS assessment tools are composed—often with a specific disease, population, or construct in mind—of items from a large item bank, using Item Response Theory.…”

“…In an article on the feasibility of a large-scale international web-based inventory of mental health outcomes after encephalitis, items were adapted from the Maudsley three item VAS (M3VAS) and the Psychiatric Diagnostic Screening Questionnaire (PDSQ) . 41 The M3VAS consists of Visual Analog Scale (VAS) on 3 core depressive symptoms: mood, anhedonia, and suicidality. The PDSQ is a tool to screen for the most prevalent mental health disorders, i.e., mood disorders, anxiety disorders, psychotic disorders, somatoform disorders, and substance use.…”