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

Objective: To describe the lived experience of patients with NORSE and explore quality of life (QOL) for patients and their caregivers.

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.