Essential services, personnel, and facilities in specialized epilepsy centers—Revised 2010 guidelines

Labiner, David M.; Bagić, Anto; Herman, Susan T.; Fountain, Nathan B.; Walczak, Thaddeus S.; Gumnit, Robert J.

doi:10.1111/j.1528-1167.2010.02648.x

Cited by 200 publications

(163 citation statements)

References 7 publications

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“…Our data add to a building body of literature that highlights the cognitive consequences of poorly controlled seizures in the developing brain and provides more support for emerging recommendations and guidelines regarding early identification of pharmacoresistance 11 and referral to specialty care, particularly for children, 21 although similar considerations also occur in adults. 33 …”

Section: Discussionmentioning

confidence: 99%

Age at onset of epilepsy, pharmacoresistance, and cognitive outcomes

et al. 2012

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Objectives: Increasing evidence suggests that uncontrolled seizures have deleterious effects on cognition and behavior, particularly in the developing brain. Methods:In a community-based cohort, 198 children, aged Ͻ8 years with new-onset epilepsy were followed prospectively and reassessed with the Wechsler Intelligence Scales for Children, Third Edition (WISC-III) 8-9 years later. Linear regression analyses with interactions between age at onset (age) and pharmacoresistance (PR) were used to test whether earlier onset conveyed greater vulnerability to the effects of uncontrolled seizures. Full-scale IQ (FSIQ) and the 4 subdomain scores were examined. Adjustment for adaptive behavior scores in a subset was performed. A dichotomous indicator for IQ Ͻ80 or Ն80 was used to permit inclusion of children who were not tested, particularly those who were untestable.Results: FSIQ was not correlated with age. PR was associated with an 11.4 point lower FSIQ (p ϭ 0.002) and similar decrements in each WISC-III domain. There were substantial age-PR interactions for FSIQ (p ϭ 0.003) and 3 domain scores, indicating a lessening impact of PR with increasing age. The dichotomous IQ indicator was strongly correlated with age at onset in the pharmacoresistant group (p Ͻ 0.0001) and not in the non-pharmacoresistant group (p ϭ 0.61). Adjustment for adaptive behavior measured near onset did not alter the conclusions. Conclusions:Uncontrolled seizures impair cognitive function with effects being most severe in infancy and lessening with increasing age at onset. These findings further emphasize the need for early aggressive treatment and seizure control in infants and young children. Seizures and epilepsy are increasingly being recognized to have moderate to profound effects on cognitive function. There is an increasing body of literature demonstrating that, in children with refractory epilepsy who are evaluated for epilepsy surgery, earlier age at onset is associated with lower IQ or developmental scores, 1-5 and longer duration of epilepsy before surgery is negatively correlated with IQ and ability to rebound after surgery 2,4,6 . A drug treatment trial for infantile spasms reported a striking correlation between both age at onset and delay to treatment with developmental scores assessed later at age 4 years.7 These studies focused on severe epilepsy (spasms) or pharmacoresistant surgical epilepsy and by design do not allow comparisons with cognitive outcomes in well-controlled epilepsy. Consequently, they cannot directly address the separate roles of onset age vs seizures in the developing brain.In a prospective community-based study of children with epilepsy, we examined the association of cognitive scores assessed 8 -9 years after initial diagnosis and age at onset of epilepsy, pharmacoresistance, and the interaction between the two. We specifically hypothesized that the

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Section: Discussionmentioning

confidence: 99%

Age at onset of epilepsy, pharmacoresistance, and cognitive outcomes

et al. 2012

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“…This 7-step model is typical of epilepsy care in the United States and is reflected in the NAEC recommendations. 36 There is inherent tension between this model and the priorities of parents whose children have early-onset epilepsy. Waiting until pharmacoresistance is evident to make a specialty referral seems counterproductive, especially when wasted time may result in lost opportunity to prevent severe, lifelong consequences.…”

Section: Patient-expressed Priorities Vs the Standard Approach: Do Wementioning

confidence: 99%

“…36 The National Institute for Health and Care Excellence guideline recommends referral after 2 years of uncontrolled seizures. 37 Step 7: Referral to comprehensive care.…”

Section: Community Resourcesmentioning

confidence: 99%

Priorities in pediatric epilepsy research

Berg¹,

Baca²,

Loddenkemper³

et al. 2013

Neurology

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The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care-particularly epilepsy specialty and behavioral health care-and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous.

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“…Specifically, we did not observe a change in surgery rates after publication of the first randomized-controlled trial demonstrating the efficacy of epilepsy surgery in 2001, 3 which was followed by joint guidelines recommending referral of patients with intractable seizures to a comprehensive epilepsy center. 4,5 Furthermore, our group has reported a drop in epilepsy surgeries at high-volume epilepsy centers during this time that appears to coincide with increased referrals to lowervolume hospitals that may have higher rates of perioperative complications. 6 It would be interesting to know whether Pestana Knight and colleagues observed a similar discrepancy between surgery trends at high-volume epilepsy centers and lowvolume hospitals in the pediatric population.…”

Section: To the Editorsmentioning

confidence: 99%