Abstracts

Rationale: It is estimated that up to 70% of individuals can control seizures with optimal medical management, yet seizure freedom is not a reality for millions of epilepsy sufferers, despite surgical options. These PWDRE must continue to live with seizures that have large effects on daily life, including disruption from seizing, injuries from falls, medication side effects, interference with education and jobs, and mental health issues. One possible way to better support PWDRE is to involve neuropalliative care (NPC), a branch of palliative medicine focused on improving quality of life (QOL) in many other chronic neurological diseases through symptom management, psychosocial and spiritual support, and future planning. We hypothesized that PWDRE have needs that can be addressed by NPC, but that they have limited prior knowledge of and exposure to NPC.

Methods: Adult PWDRE completed a 2-hour interview aimed at understanding identity, perceptions, experiences, and needs related to life with DRE. During the interview, participants were read a description of NPC and asked to discuss if it could have a role in their care. Interviews were analyzed using deductive and inductive qualitative coding methods. Participants also completed two QOL questionnaires, one used in epilepsy clinics and one used in NPC clinics—the Quality of Life in Epilepsy-10 (QOLIE-10) and the McGill Quality of Life (MQOL), respectively.

Results: 20 PWDRE from our epilepsy clinic volunteered. Mean age was 39 years (range: 27-61) with mean epilepsy duration 16 years (range: 3-42). TABLES 1 and 2 show demographic and history data. Analysis of 5 interviews revealed changes of varying degree to identity and relationships for all participants following diagnosis; 4 had difficulties coping and revealed themes that could be addressed by NPC including lack of future planning, need for social and spiritual support, and gaps in communication with their epilepsy provider. Although 4 participants had heard of NPC, only 2 could provide any description, which were focused on aging and dying; 3 participants reported an interest in NPC, 1 was unsure if it would provide current benefit, and 1 was not interested. Analysis of the surveys (n=19, 1 lost to follow-up) showed Overall QOL life was strongly correlated (R²=0.68) between the QOLIE-10 and MQOL despite different time scales (4-weeks vs 2-days). Half of respondents rated high existential distress on the MQOL regarding life progress and self-worth. Full interview and survey analysis is ongoing.

Conclusions: Epilepsy diagnosis affects PWDRE in complex ways. Most PWDRE interviewed had not heard of NPC but had a positive response to the description of NPC goals. We further identified NPC services that may benefit some PWDRE struggling to cope with a life with seizures. Future studies should address whether involvement of NPC provides measurable benefits to QOL and additional ways NPC could be tailored to meet the needs of PWDRE.

Funding: Please list any funding that was received in support of this abstract.: American Epilepsy Society Seed Grant.