Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.

LGS Lennox-Gastaut syndrome AIM To determine the efficacy of the ketogenic diet for children with Lennox-Gastaut syndrome (LGS) at our institution and in the literature. METHODThe records of children with LGS initiated on the ketogenic diet at our institution from 1994 to 2010 were reviewed. Inclusion criteria included the presence of £2.5Hz spike-and-wave complexes on electroencephalogram, multiple seizure types including tonic, atonic, or atypical absence, developmental delay, and age under 1 year. We additionally reviewed the literature for cases of LGS treated with the ketogenic diet and their outcomes.RESULTS Seventy-one children (41 males, 30 females, median age 3y 6mo, range 18mo-18y), withLGS were initiated on the ketogenic diet. Using an intent-to-treat analysis, after 6 months, 36 (51%) achieved more than 50% seizure reduction, 16 (23%) experienced more than 90% seizure reduction, and 1 (1%) achieved seizure freedom. Results were similar after 12 months. Age, sex, side effects, valproate use, and history of infantile spasms were not predictive of more than 90% seizure reduction. In the literature, 88 of 189 (47%) children with LGS had more than 50% seizure reduction after 3 to 36 months of ketogenic diet treatment. INTERPRETATIONThe ketogenic diet is efficacious in the treatment of LGS, with approximately one-half of children responding at 12 months.The ketogenic diet is a high fat, low carbohydrate dietary treatment for intractable epilepsy, predominantly used in children. Since its development, the ketogenic diet has become widely used in a variety of epilepsy syndromes including myoclonicastatic epilepsy, Dravet syndrome, and infantile spasms. 1,2 Since its introduction 90 years ago, one of the most common epilepsy syndromes for which the ketogenic diet is used in clinical practice is Lennox-Gastaut syndrome (LGS).LGS was first reported in 1950, though the electroclinical features were first described by the Marseille School in France in 1966. 3,4 The criteria for the syndrome have been modified on several occasions; however, the International League Against Epilepsy Classification Commission adopted a formal definition in 1989. 5 Most clinicians agree that patients with LGS have an age at onset of less than 8 years (peak 3-5y), multiple seizure types that include tonic seizures (with often atypical absence, atonic, and other seizure types), intellectual disability, and the presence of diffuse, slow spike-wave complexes on electroencephalogram (EEG). [5][6][7] While many large ketogenic diet trials have included children with LGS, outcome data were primarily reported by seizure type rather than any specific epilepsy syndrome. 8 As a result, when the International Ketogenic Diet Consensus Guideline was published in 2009, LGS was not included as either a clear or possible 'indication' for the ketogenic diet primarily owing to insufficient data. 1 This study sought to determine the efficacy of the ketogenic diet for children with LGS at our institution and in the literature. We hypothesized that the ...

BACKGROUND: Families must process complex information related to neonatal encephalopathy and therapeutic hypothermia.

IMPORTANCE Antiseizure medication (ASM) treatment duration for acute symptomatic neonatal seizures is variable. A randomized clinical trial of phenobarbital compared with placebo after resolution of acute symptomatic seizures closed early owing to low enrollment.OBJECTIVE To assess whether ASM discontinuation after resolution of acute symptomatic neonatal seizures and before hospital discharge is associated with functional neurodevelopment or risk of epilepsy at age 24 months. DESIGN, SETTING, AND PARTICIPANTSThis comparative effectiveness study included 303 neonates with acute symptomatic seizures (282 with follow-up data and 270 with the primary outcome measure) from 9 US Neonatal Seizure Registry centers, born from July 2015 to March 2018. The centers all had level IV neonatal intensive care units and comprehensive pediatric epilepsy programs. Data were analyzed from June 2020 to February 2021.EXPOSURES The primary exposure was duration of ASM treatment dichotomized as ASM discontinued vs ASM maintained at the time of discharge from the neonatal seizure admission. To enhance causal association, each outcome risk was adjusted for propensity to receive ASM at discharge. Propensity for ASM maintenance was defined by a logistic regression model including seizure cause, gestational age, therapeutic hypothermia, worst electroencephalogram background, days of electroencephalogram seizures, and discharge examination (all P Յ .10 in a joint model except cause, which was included for face validity). MAIN OUTCOMES AND MEASURESFunctional neurodevelopment was assessed by the Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS) at 24 months powered for propensity-adjusted noninferiority of early ASM discontinuation. Postneonatal epilepsy, a prespecified secondary outcome, was defined per International League Against Epilepsy criteria, determined by parent interview, and corroborated by medical records.RESULTS Most neonates (194 of 303 [64%]) had ASM maintained at the time of hospital discharge. Among 270 children evaluated at 24 months (mean [SD], 23.8 [0.7] months; 147 [54%] were male), the WIDEA-FS score was similar for the infants whose ASMs were discontinued (101 of 270 [37%]) compared with the infants with ASMs maintained (169 of 270 [63%]) at discharge (median score, 165 [interquartile range, 150-175] vs 161 [interquartile range, 129-174]; P = .09). The propensity-adjusted average difference was 4 points (90% CI, −3 to 11 points), which met the a priori noninferiority limit of −12 points. The epilepsy risk was similar (11% vs 14%; P = .49), with a propensity-adjusted odds ratio of 1.5 (95% CI, 0.7-3.4; P = .32). CONCLUSIONS AND RELEVANCEIn this comparative effectiveness study, no difference was found in functional neurodevelopment or epilepsy at age 24 months among children whose ASM was discontinued vs maintained at hospital discharge after resolution of acute symptomatic neonatal seizures. These results support discontinuation of ASM prior to hospital discharge for most infants wit...