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.

Objectives Self-versus proxy- perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent-report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. Methods HRQOL was assessed 8–9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87) and parent (CHQ-PF50) versions. Results There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global-items. However, parent ratings were significantly better (higher HRQOL) for sibling controls compared to epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (p≤0.05). Parent-child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case’s HRQOL were often significantly associated with 5-year remission status and current anti-epileptic drug use, but the case’s self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child’s HRQOL. Conclusion Children with epilepsy report HRQOL that is comparable to that of sibling controls while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.

Purpose Delayed diagnosis of early-onset epilepsy is a potentially important and avoidable complication in epilepsy care. We examined the frequency of diagnostic delays in young children with newly presenting epilepsy, their developmental impact, and reasons for delays. Methods Children who developed epilepsy before their third birthday were identified in a prospective community-based cohort. An interval ≥1 month from second seizure to diagnosis was considered a delay. Testing of development at baseline and for up to three years after and of IQ 8–9 years later was performed. Detailed parental baseline interview accounts and medical records were reviewed to identify potential reasons for delays. Factors associated with delays included the parent, child, pediatrician, neurologist, and scheduling. Results Diagnostic delays occurred in 70/172 (41%) children. Delays occurred less often if children had received medical attention for the first seizure (p<0.0001), previously had neonatal or febrile seizures (p=0.02), had only convulsions before diagnosis (p=0.005) or had a college-educated parent (p=0.01). A ≥1 month diagnostic delay was associated with an average 7.4 point drop (p=0.02) in the Vineland Scales of Adaptive Behavior motor score. The effect was present at diagnosis, persisted for at least three years, and was also apparent in IQ scores 8–9 years later which were lower in association with a diagnostic delay by 8.4 points (p=0.06) for processing speed up to 14.5 points (p=0.004) for full scale IQ, after adjustment for parental education and other epilepsy-related clinical factors. Factors associated with delayed diagnosis included parents not recognizing events as seizures (N=47), pediatricians missing or deferring diagnosis (N=15), neurologists deferring diagnosis (N=7), and scheduling problems (N=11). Significance Diagnostic delays occur in many young children with epilepsy. They are associated with substantial decrements in development and IQ later in childhood. Several factors influence diagnostic delays and may represent opportunities for intervention and improved care.

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.

Epilepsy is a common condition in the United States. It is estimated that 1.2% of the population or 3.4 million people have epilepsy. This figure may be underestimated because of potential repercussions and stigma in disclosing epilepsy. 1 Studies have shown that people with epilepsy are more likely to be unemployed or unable to work, have lower annual household incomes, be obese and physically inactive, and be less likely to marry. 2,3 People with epilepsy can have poor overall health status, impaired intellectual and physical functioning, elevated risk of accidents and injuries, and negative side effects from antiseizure medications. 2,3 It is estimated the annual direct medical cost of epilepsy in the United States is $9.6 billion; combined with indirect costs, the total rises to $15.5 billion yearly. 2 The American Academy of Neurology (AAN) created standardized quality measures with the overarching goal to improve the delivery of care for patients with epilepsy for providers, practices, and systems. In 2009, the first set of epilepsy measures were released with an update provided in 2014. 4,5 Quality measures are not guidelines; however, they are formed using guidelines, evidence-based medicine, and best practice consensus. Quality measures help us understand how often health care services are provided consistent with current medical knowledge. Measures are updated iteratively to reflect evidence and practice changes, as well as to reflect limitations of data collection and analysis. The AAN reviews each measurement set for updates a minimum of every 3 years. In 2017, the AAN seated a standing multidisciplinary Epilepsy Quality Measurement Set Work Group (work group) charged with updating the measurement set. This work group will revisit the epilepsy measures every 6 months, evaluating new evidence statements and new measures released by other developers. As part of this process, epilepsy measure implementation and performance data review will also occur to nimbly respond to emerging guidelines and evidence. During this initial review, the work group evaluated new evidence, 2014 epilepsy measure use data, and other new measures released by other development groups that addressed care for patients with epilepsy, such as the AAN's Child Neurology and Universal Neurology Quality Measure projects. The work group approved 6 measures and retired 6 measures from the 2014 update (table 1). Measure retirement occurs if evidence has changed, a gap in performance no longer exists, feasibility concerns exist, or significant edits are needed to the existing measure. It does not mean the topic is no longer important.

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