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.

Younger Age at Onset Is Associated With Worse Long-term Behavioral Outcomes in Anti-NMDA Receptor Encephalitis.

BACKGROUND AND OBJECTIVES: Anti-NMDA receptor encephalitis (anti-NMDARE) is one of the most common causes of encephalitis. It typically presents in adolescence and young adulthood, but little is known about its potential long-term consequences across the lifespan. Adaptive behavior describes an individual's ability to respond and adapt to environmental demands and unanticipated changes in daily routines. In this study, we evaluate the relationship between features from clinical presentation, including age, and long-term adaptive behavior in participants with anti-NMDARE. METHODS: Cross-sectional informant-reported data were collected between 2017 and 2019 from 41 individuals/caregivers of individuals with anti-NMDARE treated at 3 major academic hospitals. Neurologic disability was assessed by record review using the modified Rankin Scale (mRS). Functional outcomes were assessed using the validated Adaptive Behavior Assessment System, Third Edition (ABAS-3). RESULTS: The mean age at the time of study enrollment was 23.4 years (SD 17.0 years), and the mean time from symptom onset to study enrollment was 4.0 years. Seventeen participants were aged <12 years at symptom onset, 19 participants were aged 12-30 years, and 5 participants were aged >30 years. Mean ABAS-3 scores at study enrollment for all participants were in the average range (mean general adaptive composite standard score 92.5, SD 18.7). Individuals aged <12 years at symptom onset had lower mean ABAS-3 scores and were in the below average range compared with those aged 12-30 years at symptom onset, whose mean scores were in the average range (87 vs 99, p < 0.05). Similar differences were seen in 3 of the individual subscales (functional academics, health and safety, and self-care). There were no significant differences in mRS scores between age groups (p > 0.05). DISCUSSION: Although anti-NMDARE is associated with an overall favorable outcome, younger age at onset associates with worse long-term adaptive behavior despite no differences in neurologic disability. These findings suggest that the disease may have distinct consequences on the early developing brain. Future studies should evaluate behavioral recovery and quality of life after anti-NMDARE and identify additional factors associated with differential recovery.

Effect of Socioeconomic Status on Patients Supported with Contemporary Left Ventricular Assist Devices.

Continuous-flow left ventricular assist devices (CF-LVADs) are increasingly used in advanced heart failure patients. Recent studies suggest that low socioeconomic status (SES) predicts worst survival after heart transplantation. Both individual-level and neighborhood-level SES (nSES) have been linked to cardiovascular health; however, the impact of SES in CF-LVAD patients remains unknown. We hypothesized that SES is a major determinant of CF-LVAD candidacy and postimplantation outcomes. A retrospective chart review was conducted on 362 patients between February 2009 and May 2016. Neighborhood-level SES was measured using the American Community Survey data and the Agency for Healthcare Research and Quality SES index score. Individual-level SES was self reported. Kaplan-Meier survival analysis and multivariable Cox proportional hazards regression determined survival statistics. Patients in the highest SES tertile were older (58 ± 13 vs. 53 ± 14; p < 0.001), less likely to be black or Hispanic (26% vs. 70%; p < 0.001), more likely to be married (87% vs. 65%; p < 0.001), more likely to have private insurance (50% vs. 39%; p < 0.001), and more likely to have employment (29% vs. 15%; p < 0.001) compared with patients in the lowest tertile. Low nSES was associated with a decreased risk of death (hazard ratio [HR], 0.580; 95% confidence interval [CI], 0.347-0.970; p = 0.038) in comparison to the high nSES. However, after adjusting for baseline clinical morbidities, the relationship was no longer present. When selecting patients for a LVAD, SES should not be thought of as an immutable risk factor. Carefully selected low-SES patients could be safely implanted with CF-LVAD with outcomes comparable to high-SES patients.