Abstracts

Rationale: Seizures are a common presenting feature of autoimmune and infectious encephalitis. Patients with seizures face challenges upon hospital discharge because of complicated medication regimens and the potential for difficulty understanding discharge instructions due to possible cognitive dysfunction. Transitions from inpatient to outpatient care and caregiver burden for those caring for patients with complex illnesses have become increasingly important issues within the healthcare system. In this study, caregivers of patients with autoimmune and infectious encephalitis were surveyed regarding care transitions and caregiver burden. Methods: Self-identifying caregivers of individuals with autoimmune and infectious encephalitis were recruited via a link provided on the UK-based Encephalitis Society website. Cases were included if the caregiver recalled the presence of a particular infectious agent or autoantibody. Caregivers were asked to anonymously complete a demographic survey about the person with encephalitis, the Care Transition Measure (CTM-15) survey, and the Zarit Burden Interview (ZBI). Total scores on the CTM-15 range from 0-100, with lower scores denoting worse transition. Total scores on the ZBI range from 0-88, with higher scores categorized as more severe burden. Results: 132 eligible participants from 8 countries participated in the study. 54/132 (41%) of individuals cared for by the study’s participants had autoimmune encephalitis (most commonly anti-NMDA receptor encephalitis, n=37), 76/132 (58%) had infectious encephalitis (most commonly HSV encephalitis, n=52), and 2/132 (1%) had both autoimmune and infectious encephalitis. Mean age of symptom onset was 32.4 years (range 0-82 years, standard deviation: 22.7 years), and mean duration since symptom onset was 5.5 years. 40% of individuals with encephalitis were male, and 60% were female.52% of caregivers reported that the person with encephalitis was initially misdiagnosed. Of misdiagnoses: 41% were psychiatric, 20% were neurological, and 36% were routine infections. Caregivers had a mean score of 44.7 on the CTM-15 (standard deviation: 27.4). The items caregivers most strongly disagreed with were: when the patient left the hospital, “I was confident that I knew what to do to manage their health”, “I had a good understanding of their health condition and what makes it better or worse”, and “I had a readable and easily understood written plan that described how all of their health care needs were going to be met.” On the ZBI, caregivers had a mean score of 31.5 (standard deviation: 15.0), which fell in the mild burden range (21-40). The items for which caregivers reported highest degree of burden were “Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?”, “Are you afraid what the future holds for your relative?”, and “Do you feel your relative is dependent on you?”. Scores on both measures did not differ between caregivers of individuals with autoimmune versus infectious encephalitis. Conclusions: Caregivers frequently note initial misdiagnosis for patients with encephalitis, express dissatisfaction with transitions from inpatient to outpatient care, and experience high levels of caregiver burden. These stressors related to acute care management may contribute at least in part to increased caregiver burden. Attention to these aspects of care in individuals with encephalitis can inform future interventions, which may lead to improved patient and caregiver outcomes. Funding: None