A qualitative exploration of patient experiences living with autoimmune encephalitis

Autoimmune encephalitis (AE) can result in significant long-term sequelae including cognitive dysfunction, leading to a reduction in quality of life. While cohort studies have highlighted these difficulties broadly, we require a deeper understanding of the challenges facing these individuals in their day-to-day lives to provide better care and support. This qualitative descriptive study aimed to accurately capture the experiences of people living with AE across Australia and understand potential gaps in medical care. Inductive qualitative content analysis identified four key categories that have influenced participants and their carers experiences living with AE: (1) Access to quality medical care and factors that led to delays in diagnosis and treatment, (2) Chronic symptoms and their impact on their day-to-day lives, (3) Re-integration into premorbid life, and (4) Carer burden. Appropriate timely diagnosis and treatment was influenced by variation in clinician knowledge and available resources. Disparities in availability of medical care were observed between rural, metropolitan, primary, and tertiary care providers. Cognitive dysfunction, fatigue, and treatment-resistant seizures were common chronic symptoms that drove poor quality-of-life, changes to pre-morbid roles and social isolation. Together, access to quality care, high burden of chronic symptoms and poor social and healthcare supports contributed to carer overburden.