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.