Blank, Leah J.

Abstract Objective This study aims to better characterize the long‐term neurological quality of life (QOL) outcomes (using the Neuro‐QOL scale) in survivors of new onset refractory status epilepticus (NORSE), including its subtype febrile infection‐related epilepsy syndrome (FIRES), and provide guidance for psychological and social support strategies. Methods Utilizing data from a multicenter prospective study of NORSE/FIRES led by Yale University, we enrolled patients who completed the validated, patient‐reported Neuro‐QOL scale at least once at 3–6 months ( n = 37), 12 months ( n = 29), 24 months ( n = 23), or ≥36 months ( n = 9) following discharge. The Neuro‐QOL scale assesses physical, mental, and social health in patients with neurological disorders. QOL impairment (QOL‐I) scores were calculated, with higher scores indicating greater impairment. T ‐scores enabled comparisons with reference populations. Results In adults, median QOL‐I improved from 44.1% at 3–6 months to 37.6% at 36+ months. Paired analysis showed significant improvement in QOL‐I between 3–6 and 24 months ( p = .016), with specific improvements in communication, satisfaction with social roles, fatigue, and mobility. Greater improvement was also observed for participation in social roles (5.5‐point T ‐score gain) compared to the reference population, suggesting meaningful change. A gradual improvement in overall QOL‐I scores was also observed in pediatric participants, despite a modest sample size ( n = 5 with data at 3–6 and 12 months). Measures of fatigue and anxiety persisted in adults, and cognitive difficulties persisted in both adults and children. In adults, longer status epilepticus duration and intensive care unit stay were associated with poorer QOL. Additionally, a higher number of antiseizure medications was associated with more depression, cognitive impairments, and perceived stigma. Significance These findings highlight the potential for recovery following an acute episode of NORSE, although many patients continue to face challenges requiring ongoing support, and the clinical meaning of the reported QOL improvement remains unclear. Furthermore, the findings underscore the importance of strategic multidisciplinary support systems in the years following discharge.

While hormonal changes have been recognised to influence seizure control and have been studied in association with menstrual cycles and pregnancy, there is a paucity of data on the menopause transition in epilepsy. Given the known effects of sex steroid hormones on neuronal excitability, their endogenous fluctuations during perimenopause, as well as menopause hormone treatments, may alter seizure control. Epilepsy may also be associated with premature ovarian insufficiency and early menopause. This is especially important for epilepsy-related comorbidities, for which menopause can constitute a second hit, such as osteoporosis. Additional considerations for females with epilepsy across the menopause continuum include changes in antiseizure medication clearance and potential interactions with menopausal hormone therapy or other concomitant medications. This comprehensive review summarises the currently available literature on epilepsy and menopause, highlights gaps in knowledge, and underscores the need for research efforts, particularly longitudinal studies investigating the menopause transition.