OBJECTIVE
Although shorter time to pediatric resective epilepsy surgery is strongly associated with greater disease severity, other non-clinical diagnostic and sociodemographic factors also play a role. We aimed to examine parent-reported barriers to timely receipt of pediatric epilepsy surgery.
METHODS
We conducted 37 interviews of parents of children who previously had resective epilepsy surgery at UCLA (2006–2011). Interviews were audio-recorded, transcribed and systematically coded using thematic analysis by two independent coders and subsequently checked for agreement. Clinical data, including `time to surgery' (age of epilepsy onset to surgery) were abstracted from medical records.
RESULTS
The mean time to surgery was 5.3 years (SD=3.8); surgery types included 32% hemispherectomy, 43% lobar/focal, 24% multilobar. At surgery, parents were on average 38.4 years (SD=6.6) and children were 8.2 years (SD=4.7). The more arduous and longer aspect of the journey to surgery was perceived by parents to be experienced prior to presurgical referral. The time from second anti-epileptic drug failure to presurgical referral was ≥1 year in 64% of children. Thematic analysis revealed four themes (with subthemes) along the journey to surgery and beyond: (1) recognition: “something is wrong” (unfamiliarity with epilepsy, identification of medical emergency), (2) searching and finding: “a circuitous journey” (information seeking, finding the right doctors, multiple medications, insurance obstacles, parental stress), (3) surgery is a viable option: “the right spot” (surgery as last resort, surgery as best option, hoping for candidacy), and (4) life now: “we took the steps we needed to” (a new life, giving back).
SIGNIFICANCE
Multi-pronged interventions targeting parent-, provider- and system-based barriers should focus on the critical presurgical referral period; such interventions are needed to remediate delays and improve access to subspecialty care for children with medically refractory epilepsy and potentially eligible for surgery.
Objective To explore decision-making from patients’ perceptions of risks and benefits of epilepsy surgery for refractory focal seizures. Methods Using constructivist grounded theory, in-person interviews were conducted with 35 adults with refractory focal epilepsy who were undergoing a pre-surgical evaluation or who had consented for surgery. Results For this sample of participants decision-making about surgery was complex, centering on the meaning of illness for the self and the impact of epilepsy and its treatment for significant others. Two interrelated categories crystalized from our data: the unique context of brain surgery and how the decisional counterweights of risks and benefits were considered. Discussion Exploring components of decision-making from the patients’ perspective afforded an opportunity to describe thought processes intrinsic to how people with drug-resistant epilepsy weighed their treatment options. Tensions were evident in how decisions were made. We use the analogy of an imaginary tightrope-walker to create a visual image of what patients face as they consider the illness experience (past and present), their hopes for the future, and the simultaneous uncertainty centered around balancing the counterweights of treatment risks and benefits.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.