Christine Bower Baca

Summary: Objective: Although shorter time to pediatric resective epilepsy surgery is strongly associated with greater disease severity, other nonclinical 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 University of California Los Angeles (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 (standard deviation [SD] 3.8); surgery types included 32% hemispherectomy, 43% lobar/focal, and 24% multilobar. At surgery, parents were on average 38.4 years (SD 6.6) and children were on average 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 antiepileptic 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: Multipronged 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.

To assess (1) whether the generic Short Form (SF)-36, an integrated component of the epilepsy-targeted Quality of Life in Epilepsy Inventory-89 (QOLIE-89), is able to detect differences in the health-related quality of life (HRQOL) between young adults with epilepsy and healthy sibling controls and (2) whether the generic components are as sensitive to within-disease symptom severity as the epilepsy-targeted components of the QOLIE-89 in young adults with epilepsy. A cohort of young adults with epilepsy (N = 108, age 21.6 years SD = 3.8), followed since diagnosis in a prospective community-based study of childhood-onset epilepsy, completed the QOLIE-89, an epilepsy-targeted HRQOL instrument that includes within it a generic core measure (SF-36). Sibling controls (N = 82, age = 20.7 years, SD = 2.1) completed the generic core, SF-36. Age- and gender-adjusted QOLIE-89 epilepsy-targeted and cognitive-distress composite scores and the overall score were strongly associated with seizure-free duration: seizure-free ≥5 years (higher HRQOL), n = 57; seizure-free 1–5 years, n = 22; or seizure-free n = 29 (lower HRQOL) (p < 0.001). However, on QOLIE-89 physical health and mental health composite scores, there were no differences across these seizure-free duration groups. For cases compared with sibling controls, there were no differences on SF-36 physical and mental health composite scores or the global composite score, using either classical test or item-response theory scoring procedures. While the epilepsy-targeted components of the QOLIE-89 are sensitive to seizure-related factors in young adults with epilepsy, the SF-36 generic core measures are not, thereby limiting HRQOL comparisons between young adults with epilepsy and sibling controls.

Objective: To identify clinical and nonclinical factors associated with time from epilepsy onset to surgical evaluation and treatment among a cohort of children having epilepsy surgery. Methods: Data were abstracted from records of 430 children (younger than 18 years) who had epilepsy neurosurgery at the University of California, Los Angeles from 1986 to 2010. Multivariable Cox proportional hazards models were used to analyze unique associations of clinical severity, pre-referral brain MRI, and sociodemographic characteristics with time to surgery. Results: Shorter time to surgery was associated with active (hazard ratio [HR] 5.67, 95% confidence interval [CI] 3.74–8.70) and successfully treated infantile spasms (HR 2.20, 95% CI 1.63–2.96); daily or more seizures (HR 2.09, 95% CI 1.58–2.76); MRI before referral regardless of imaging findings (HR 1.95, 95% CI 1.47–2.58); private insurance (HR 1.54, 95% CI 1.14–2.09); and Hispanic ethnicity (HR 1.38, 95% CI 1.01–1.87). There were race/ethnicity by insurance interactions (log-rank p = 0.049) with shortest time to surgery for Hispanic children with private insurance. Conclusions: Shorter intervals to surgical treatment were associated with greater epilepsy severity and insurance type, consistent with existing literature. However, associations of shorter times to treatment with having a brain MRI before referral and Hispanic ethnicity were unexpected and warrant further investigation. More knowledgeable referring providers and parents with greater help-seeking capability may explain obtaining an MRI before referral. Shorter intervals to surgery among Hispanic children may relate to the same factors yielding an increased volume of Hispanic children receiving surgery at the University of California, Los Angeles since 2000.

OBJECTIVE: We compared associations of epilepsy remission status and severity as well as psychiatric and other comorbidities with child and parent-proxy reports of health-related quality of life (HRQoL) in adolescents previously diagnosed with epilepsy. METHODS: In a prospective, community-based study of newly diagnosed childhood epilepsy, HRQoL of 277 children was assessed 8 to 9 years after diagnosis by using child and parent-proxy versions of the Child Health Questionnaire (CHQ). Multiple linear regression models adjusted for age and gender were used to compare associations of epilepsy remission and “complicated” epilepsy (secondary to an underlying neurologic insult or epileptic encephalopathy) status and psychiatric and other comorbidities with HRQoL. RESULTS: Mean age of epilepsy onset was 4.4 years (SD: 2.6). At the 9-year reassessment, children were, on average, 13.0 years old (SD: 2.6); 64% were seizure-free for 5 years, 31% were taking antiepileptic drugs, and 19% had a complicated epilepsy. Prevalence of comorbidities at follow-up were 26% psychiatric diagnosis; 39% neurodevelopmental spectrum disorder (NDSD); 24% chronic medical illness; and 15% migraine. In multivariable analysis, having a psychiatric disorder was broadly associated with child (6 of 11 scales) and parent-proxy (7 of 12 scales) HRQoL (P ≤ .0125). Five-year remission and complicated epilepsy status had few or no associations with HRQoL. Although parent-proxy HRQoL was strongly associated with NDSD (6 of 11 scales), child-reported HRQoL was not (2 of 11 scales). CONCLUSIONS: Psychiatric comorbidities are strongly associated with long-term HRQoL in childhood-onset epilepsy, which suggests that comprehensive epilepsy care must include screening and treatment for these conditions, even if seizures remit.