Abstracts

Rationale: Surgery for focal epilepsy meets the needs of less than 2% of eligible candidates. Patients’ views of disease severity are little understood and may contribute to how and when this viable option is weighed. Considering surgery presents a unique challenge since epilepsy is a brain disorder that impacts neurobiological processes in decision making. We explored patients’ perceptions of disease severity and how surgical risks and benefits are weighed to inform a practice model to promote collaborative decision making among patients suffering uncontrolled focal epilepsy.Methods: Personal, semi-structured interviews with were done in patients with focal drug resistant epilepsy undergoing presurgical evaluation (n=13) or who had recently consented for surgery (n=15). Grounded theory methodology directed data collection and analysis.Results: The 28 participants (15 females) were diverse in terms of age (mean=37 years, 19-68), duration of epilepsy mean=12.7 years; range 3-30 years) and culture, with an average of 14 years of education. The average duration of the interviews was 105 minutes. Reflecting on past treatment experiences led participants to conclude that continued drug therapy was no longer effective and to anticipate little improvement in the future. They have coped with their epilepsy, but their worlds are shrinking. Disease severity was described as multidimensional including ratings of self-perceived disability, seizure severity, and the opinions of others. Although participants referred to the impact of unpredictable seizures on safe living, and acknowledged that both epilepsy and surgery may result in death, this threat was not necessarily a dominant factor driving decisions. Living with caution is integral to life with epilepsy. Overcoming safety restrictions is identified as pivotal in surgical decision making. Despite the passage of many years during which treatment expectations were not met, participants remained hopeful. Curiously, concern about time lost to epilepsy was not expressed. Epilepsy is viewed as a hidden disability contained within the brain and not immediately obvious to others. High value is placed on the functional importance of the brain and the meaning of opening the head. While possible adverse surgical risks were uppermost, such consequences were weighed against the urgency to treat the seizures and compounded by the fear of becoming a burden should complications occur. Taking steps to consider surgery were not made in a vacuum, but are described as long and deep decisions that take into account life circumstances and belief systems.Conclusions: A continuum reflective of the complex process leading to a presurgical evaluation and consenting for surgery is punctuated by phases. Along this trajectory, information is assimilated that attests to perceptions of severity, knowledge of risks and benefits, and ultimately the degree of urgency motivating improved care. Implications of our work include a patient-related practice model to guide clinicians.