This abstract has been invited to present during the Better Patient Outcomes through Diversity Platform poster session
Rationale: Quality of Life (QOL) in individuals with epilepsy is often considered to be influenced by seizure control and medication side effects. This qualitative pilot study aimed to understand the impact of epilepsy on everyday lives of patients beyond seizure control alone.
Methods: We conducted semi-structured life narrative interviews with 21 adults with focal epilepsy in southeastern Michigan. Grounded theory methodology guided data collection and analysis. Inductive coding, collaborative analysis, and memo-writing were used to reduce interpretive bias.
Results: Participants were mostly female (81%), ethnically diverse, with a mean age of 40 years (18-64, median 32), and a mean pre-tax household income of $50-75k (median $35-49k). Participants received an epilepsy diagnosis four to 42 years prior to the interview and were being treated with anti-seizure medication. Interview duration was an average of 72 minutes. The most frequent themes were:
Real-world impact of the unpredictable nature of seizures, e.g., losing a day of school or putting co-workers at risk (n=20).
Time-consuming nature of planning ahead and relying on others for everyday activities: commuting to work, follow-up visits, maintaining a sleep schedule, cooking, driving, taking care of family, e.g., dropping children to school (n=19).
Negative and oversimplified representations of epilepsy in the media (e.g., only showing GTC seizures and inappropriate bystander responses to seizures) and poor public awareness of epilepsy as compared to other chronic diseases (e.g., diabetes and cancer are much more visible, understood, and funded) (n=16).
Employment limitations and insecurity: blue-collar, medical, emergency, and military service jobs are not viable options. Many have lost a job upon having a seizure at work due to liability concerns via technicalities or loopholes in the job description (n=12).
Poor communication and coordination between providers (primary care, neurologist, and psychologist) (n=11).
Impact of long lasting post-ictal symptoms/effects (aphasia, severe fatigue, headache) limiting normal work-life activities (n=10).
Many participants placed the perceived impact of seizures on an equal footing with the perceived impact of treatment on their ability to function as an individual, family member, social being, and employee. Despite refractory seizures, 15 participants expressed satisfaction with seizure control: 70% of people with focal seizures and 50% of people with convulsive seizures were satisfied despite imperfect seizure control because they were able to function (work, attend school, engage in recreational activities, have a social life). Limitations: Our sample is small and does not include pediatric patients so our findings may not be immediately generalizable. Conclusions: Providers should be cognizant that patients who are able to maintain QOL can accept and put a serious medical condition (epilepsy) into perspective and even accept some seizures; although the eventual treatment goal remains zero seizures and zero side-effects. Future implications of this study include the development of a comprehensive randomized survey to measure the relative impact of these themes on QOL and assist patients and providers in decision making.
Funding: Please list any funding that was received in support of this abstract.: Rackham Program in Public Scholarship, Initiative on Disability Studies, University of Michigan Office of Research.
