Abstracts

Rationale:
As epilepsy treatments advance, there is a need to identify and ideate around key unmet needs to improve patient and provider experiences. Nearly a quarter of patients are left untreated in the United States despite a growing number of pharmacologic and non-pharmacologic treatment options.
Method:
To understand challenges and unmet needs in living with and managing epilepsy, we mapped the patient-family journey through ethnographic fieldwork. Ten qualitative immersions with epilepsy patients and caregivers (5 pediatric and caregiver, 5 adult) across the United States were conducted (40+hours of observation and discussion in patients’ homes). To understand key players and interactions from health care ecologies within each phase, 20 interviews with stakeholders in the drug-resistant epilepsy care ecology (7 epileptologists, 6 neurologists, 4 neurosurgeons, 3 nurses/nurse practitioners) were conducted, constituting 25+ hours of field observation in clinics and Comprehensive Epilepsy Centers (Levels 3 and 4).
Results:
We identified four distinct phases of the patient journey: from their first seizure to redefining what treatment ‘success’ means when drug-resistant. Showcased ‘moments of meaning’ bring each phase to life, providing context and highlighting unmet needs. Our results present numerous ‘patient-provider’ gaps, along with uncovering needs unique to each group. More importantly, our results present strategies to address these unmet needs and transactional downfalls within each phase.
Conclusion:
This ethnographic study uncovers numerous knowledge gaps about the management of epilepsy in the United States, thereby presenting opportunities to advance drug-resistant epilepsy treatment and subsequent management.
Funding:
:LivaNova