Abstracts

Rationale: We previously found that although shorter time to pediatric resective epilepsy surgery is most strongly associated with greater disease severity (history of infantile spasms, daily seizures) other non-clinical diagnostic and sociodemographic factors also play a role. In follow-up, we aimed to examine parent-reported barriers to timely receipt of pediatric epilepsy surgery. Methods: We conducted 37 interviews of parents of children who had previously had resective epilepsy surgery at UCLA (2006-2011; n=146); parents were recruited purposively oversampling those with longer times to surgery. Interviews were comprised of structured and semi-structured components. Interviews were audio-recorded, transcribed and translated. Interview content was systematically analyzed using thematic coding methodology by two independent coders and checked for agreement. Clinical data, including ‘time to surgery' (age of onset to age of surgery, years, mean 5.3 yrs, SD=3.8), seizure frequency (69% ≥ daily seizures), history of infantile spasms (41%) and type of surgery (32% hemispherectomy, 43% lobar/focal, 24% multilobar), were retrospectively abstracted from medical records. Results: Parents were on average 38.4 yrs of age (SD=6.6) at time of surgery, 68% Caucasian and 54% had ≥4-years of college. Most (70%) parents did not know that their child was having a seizure that first time. Delays were observed at several time point; time from seizure onset to epilepsy diagnosis was ≥1 year in 19%, while time from second anti-epileptic drug failure to presurgical referral was ≥1 year in 64% of children. While epilepsy was diagnosed by a pediatric neurologist (or epileptologist) in most children (95%), nearly one-third (30%) were referred for presurgical evaluation by a non-neurologist (n=8) or self-referred (n=3) (Table). Thematic analysis revealed four themes along the journey to pediatric epilepsy surgery (with subthemes): (1) recognition: "something is wrong" (unfamiliarity with epilepsy, identification of medical emergency), (2) searching and finding: "a circuitous journey around the world" (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), (4) life now: "we took the steps we needed to" (a new life for family, giving back to other parents in need). The more arduous and longer aspect of the journey to surgery was largely perceived to be experienced prior to the presurgical evaluation. Conclusions: Parents of children who have had epilepsy surgery perceive a spectrum of parent-, provider- and health-system based barriers that influence the ease of getting to and the timeliness of receipt of surgery. Parents perceived barriers to be most pronounced early in journey, prior to the referral for presurgical evaluation. Multi-pronged interventions targeting parent-, provider- and system-based barriers are needed to remediate delays and improve access to subspecialty care for children with medically refractory epilepsy in need of surgery.