Abstracts

Rationale: The terms and descriptions of seizures and emergencies used by patients, caregivers and healthcare providers (HCP) differ.  Patients often associate seizure occurrences with a life event or a description of the day. The patient’s linkage to how the seizure event made them feel can be overlooked or missed. HCPs approach is clinically oriented and focused on the number of seizures in a given period. This study examined the lexicon gap between the adult patients, parents of children with epilepsy, and HCP.  Methods: Qualitative research identifying associations used by patients and caregivers to discuss their seizures were employed. Interviews were conducted by psychologist in three major US cities. Inclusion criteria included: diagnosed at least three years ago; seizures witnessed by others; under the care of HCP; taking daily medication; adult age 25-65 or parent of child age 6-17. Participants were divided into four seizure frequency groups: no recent, infrequent, occasional or frequent seizures. HCP included: board certified neurologist, epileptologists, and nurses. (Table 1) Interviews were conducted to help unearth the unconscious emotions and concerns and the preferred language and psychological impact of words. Psychiatric interviewing practices were employed including word association, personification, projection, memories and fantasy/storytelling methods. Results: Thirty eight individuals were interviewed:13 HCP, 19 adult patients, 6 parents of children with epilepsy.  Half the group (n=19) were specifically ask about terminology used.   Three main themes emerged:1. Patients associate seizures with life events and typically use emotional words to describe them, while HCPs reference clinical definitions and terminology. This is consistent with previous findings. (Beulow 2016)2. Patients feel all seizures are emergencies and are concerned about the impact after the seizure event.  HCPs consider seizures lasting more than 5 minutes to be emergencies and primarily focus on the physical injury from a seizure verses neuronal damage.3. Patients/caregivers are unaware of options to stop a seizure or prevent emergency, because HCPs are not discussing these possibilities. Conclusions: Gaps in how patients, parents and HCPs discuss seizures limit shared understanding of seizure burden. Difficulty measuring seizure burden that reflects the true meaning to patients and parents may stem from these limitations. Clinical variables about seizures do not reflect burden from patient/parent perspective. These gaps are barriers to understanding the burden of seizures and how to provide effective treatment.  This research suggests changing how people talk about the epilepsy experience. Consider asking about good and bad days and events around seizures, followed by clinical variables and impact on life. Self management education should include learning how to talk about the epilepsy experience, risks and impact. Funding: The study was funded by Neurelis, Inc.