Abstracts

Rationale: The treatment goal for newly diagnosed epilepsy is seizure freedom, usually defined as no seizure for 12 months or more, achieved as soon as possible with minimal or no medication-related adverse effects. It is not possible, however, to predict which antiseizure medication will be most effective, and patients might try many medications before finding the right one. While previous quantitative studies have shown that poor seizure control has immediate negative impacts on the health and quality of life of people with epilepsy, they do not provide detailed understandings of the issues faced while waiting for antiseizure medication to work. To ensure appropriate investment is being undertaken in gaining early seizure control, we aimed to understand the experiences of people with recently diagnosed epilepsy as they wait to achieve seizure freedom. Additionally, we aimed to explore their perceptions of technological interventions that assist clinicians in rapidly identifying the most effective antiseizure medication/s for individual patients.

Methods: We purposively sampled adults of working age within four years of their epilepsy diagnosis. Semi-structured interviews were undertaken with 14 people aged 21 to 44 years (median 24.5 years) who reside in metropolitan and regional areas of Australia between July and September 2021. A reflexive thematic analysis was performed.

Results: Results revealed four main themes: 1) Impact on mental health, as people with newly diagnosed epilepsy described waiting for seizure freedom as a time of vulnerability, uncertainty and confusion. Participants reported feeling “unsafe” and “questioning everything” about their diagnosis and future as they struggled to process changes in their life. 2) A time of frustration and desperation while waiting for answers, to see a neurologist, to see if antiseizure medication would be effective, to find the ‘right’ medication. During this time, participants described their life as “on hold,” as driving restrictions and feeling unsafe reduced independence and freedoms. Restrictions on activities related to work, privacy, living arrangements, social participation, and planning for the future. 3) Difficulty navigating health systems to find and understand information about epilepsy, tests and medications, and to find the ‘right’ health professional to address their needs. 4) Technology systems that support clinician decision making with selecting effective medications early after diagnosis were welcomed by participants. All noted the potential to reduce a time of “desperation” as a positive advancement.

Conclusions: Waiting for seizure freedom was a challenging, chaotic, and emotional time. Interventions are needed to reduce the negative impacts experienced by people who are newly diagnosed with epilepsy while waiting for effective seizure control. Technology systems that support clinician decision making were acceptable, as people with epilepsy sought accessible and effective solutions to restore a sense of control in their lives.

Funding: Please list any funding that was received in support of this abstract.: No funding was received in support of this abstract.