Navigating life after New-onset refractory status epilepticus (NORSE) and Febrile infection-related epilepsy syndrome (FIRES): Insights from caregiver and patient interviews

• Published in: Epilepsy & behavior 2025-02, Vol.163, p.110236, Article 110236
• Main Authors: Eschbach, Krista, Reedy, Julia, Gofton, Teneille, Gopaul, Margaret, Farias-Moeller, Raquel, Kellogg, Marissa, Knupp, Kelly, Hirsch, Lawrence J., Wong, Nora, Dorsey Holliman, Brook
• Format: Article
• Language: English
• Subjects: Febrile infection related epilepsy syndrome; FIRES; New onset refractory status epilepticus; NORSE; QOL; Quality of life
• ISSN: 1525-5050; 1525-5069; 1525-5069
• DOI: 10.1016/j.yebeh.2024.110236

[Display omitted] •NORSE has significant life-altering impacts on patients and their family members.•Physical health, mental / behavioral health, and social-relational changes impact patient experiences and QOL after NORSE.•Family members often assume caregiving roles, leading to substantial life changes.•There is a need for resources and supports targeted at improving patient and caregiver QOL in the chronic phase of NORSE. To describe the lived experience of patients with NORSE and explore quality of life (QOL) for patients and their caregivers. NORSE is a rare condition characterized by refractory status epilepticus, often of unknown cause, in a previously neurologically healthy individual. Febrile infection-related epilepsy syndrome (FIRES) is a subset of NORSE. NORSE is associated with a risk of mortality, acute morbidity, and neurocognitive sequela with limited data about the long-term impacts. We conducted in-depth individual or dyadic semi-structured interviews with patients and caregivers. Interviews explored the long-term experiences after NORSE and its impacts on patient and caregiver QOL. Data were analyzed using a thematic content analysis approach. Fourteen interviews, comprising 5 patients and 15 caregivers, were completed between April 2023 – February 2024. The median age at NORSE onset was 17 years (IQR: 11.00 – 20.25) with a median of 5.60 years (IQR: 3.88 – 8.50) since onset. While experiences varied based on NORSE outcomes and time since onset, we identified the following themes: 1) Seizures, medication side effects, and comorbid health concerns impact patient independence and QOL; 2) Mental and behavioral health concerns compounded by loneliness and isolation impact patient QOL; 3) Friend and family relationship changes impact patient social and emotional QOL; 4) Family members take on care of the patient and experience significant life changes. NORSE has significant life-altering impacts on patients and caregivers. These findings highlight a need to evaluate outcomes and provide support that extends beyond seizure management.