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.

Assessment of long-term psychosocial outcomes in anti-NMDA receptor encephalitis.

PURPOSE: The purpose of this study was to assess long-term psychosocial outcomes of anti-N-methyl-d-aspartate (NMDA) receptor encephalitis (anti-NMDARE). METHODS: Adolescents and adults with self-reported anti-NMDARE were invited to complete an online survey distributed by relevant patient organizations. Demographic and clinical information was collected, including the diagnoses initially given for anti-NMDARE symptoms and posthospital care received. Patient-Reported Outcomes Measurement Information System (PROMIS) Psychosocial Impact Illness - Negative short form (Negative PSII) was administered to assess psychosocial outcome of anti-NMDARE. Associations between clinical factors and psychosocial outcomes were evaluated. RESULTS: Sixty-one individuals with anti-NMDARE age 15 years and above participated. Mean age was 33.7 years (standard deviation [SD]: 12.8), and participants were predominantly female (90.2%, n = 55). Mean T-score on PROMIS Negative PSII was 60.7, >1 SD higher (worse psychosocial function) than that of the provided normalized sample enriched for chronic illness (50, SD: 10). Initial misdiagnosis of anti-NMDARE symptoms was associated with decreased odds (odds ratio [OR]: 0.11, p < 0.05), and follow-up with a psychiatrist after hospitalization with increased odds (OR: 8.46, p < 0.05), of return to work/school after illness. Younger age of symptom onset and presence of ongoing neuropsychiatric issues were predictive of worse Negative PSII scores (p < 0.05). CONCLUSION: Individuals with anti-NMDARE demonstrate poor psychosocial outcomes, yet there are no current standards for long-term assessment or management of such symptoms in this population. These findings highlight the need for use of more comprehensive outcome measures that include assessment of psychosocial function and the importance of developing interventions that address this domain for individuals with anti-NMDARE.

Assessment of care transitions and caregiver burden in anti-NMDA receptor encephalitis.

PURPOSE: The purpose of the study was to assess care transitions and caregiver burden among caregivers of individuals with anti-N-methyl-d-aspartate (NMDA) receptor encephalitis (anti-NMDARE). METHODS: Caregivers of individuals with anti-NMDARE were recruited via patient organization websites. Demographic and clinical information as well as responses to the Care Transition Measure 15 (CTM-15) and Zarit Burden Interview (ZBI) were collected. Exploratory factor analysis (EFA) was conducted on the ZBI, and underlying constructs were analyzed for associations with the CTM-15 and clinical characteristics. RESULTS: Seventy-six caregivers participated. On the CTM-15, the top items where caregivers disagreed or strongly disagreed were the following: "when the patient left the hospital, I had a readable and easily understood written plan that described how all of their healthcare needs were going to be met" (73%), "when the patient left the hospital, I was confident that I know how to manage their health" (62%), and "when the patient left the hospital, I had all the information I needed to be able to take care of them" (58%). Worse care transitions significantly predicted higher caregiver burden scores. Mean ZBI score was 44, falling in the moderate to severe burden range. Exploratory factor analysis was conducted and found four common underlying factors associated with total score. Factor 1, the impact of caring on caregivers' personal lives (accounting for 51% of total score variance), was selected for further analysis because of its modifiable nature. Higher ZBI scores were associated with lower CTM-15 scores (p < 0.003) and the individual with anti-NMDARE not returning to driving (p < 0.002). CONCLUSION: This study identified specific elements of care transitions and caregiver burden that are not currently being addressed for individuals with anti-NMDARE. Attention to these aspects of care in the development of targeted interventions may improve outcomes in individuals with anti-NMDARE and their caregivers.