Objective: Hemispheric surgeries are an effective treatment option to control seizures for children with hemimegalencephaly (HME); however, not enough is known about their cognitive outcomes. This study aimed to delineate the cognitive and language outcomes after hemispherectomy for HME and identify the clinical characteristics associated with cognition and language.Methods: Data came from the Global Pediatric Epilepsy Surgery Registry, a patient-driven web-based registry for epilepsy surgery. We focused on children's functional status, assessed through parent-reports of cognitive and language skills. Parents also reported on their satisfaction with surgery, their child's quality of life, and various demographic, clinical, and surgery characteristics.Results: Parents of 45 children (40% female) participated. Children were aged 2.6 (SD 6.5) months at seizure onset, 10.8 (SD 12.7) months at hemispherectomy, and 8.7 (SD 4.8) years at follow-up, at which point 68% were seizure-free. We found that at follow-up, 43% had average or mildly impaired cognition, 26% could speak age appropriately, and 21% had satisfactory reading skills. A total of 55%, 43%, and 17% of children first babbled, spoke their first words, and started speaking in sentences at an age-appropriate period, respectively. Children who had undergone a right hemisphere resection and those who were older at epilepsy onset were more likely to have better cognitive and language outcomes. Significance: Children with HME have delayed language milestones and continue to require significant language and literacy support long-term after cerebral hemispherectomy.

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The 2021 Curing the Epilepsies Conference brought together patient advocacy organizations, professional societies, researchers, and clinicians to discuss transformative priorities that could significantly advance research toward cures and improved health outcomes for people with epilepsy. During the three-day conference, key gaps and opportunities were identified and have been summarized in separate editorials from the Epilepsy Research Benchmark Stewards and patient advocacy organizations. Patient advocates identified the following priorities as critical to advancing research on epilepsy, (1) integrating epilepsy care and research; (2) reducing health disparities for underserved communities; (3) improving measurement and tracking of patient outcomes; and (4) establishing national data on burden, incidence, prevalence, and mortality. Key to driving these transformative priorities is the development of a National Plan. This strategic plan would align and integrate basic, translational, clinical, population, and implementation research with the infrastructure, incentives, and resources to put the nation on a path to developing cures and improving the quality of life for every person touched by epilepsy.Over two decades ago, a movement led by advocacy organizations, professional societies, and governmental agencies challenged the epilepsy research community to focus on the difficult problem of curing epilepsy, defined as "no seizures, no side effects, and prevention for those at risk." This challenge to take the science beyond controlling seizures, the central

Objective Persons who have experienced homelessness and are living in permanent supportive housing experience high rates of health and mental health problems. Given that physical activity is associated with improved health outcomes and persons with homelessness histories report high rates of cell phone use, phone-based interventions to increase physical activity may be effective for improving health and wellbeing among persons in permanent supportive housing. Methods To understand the acceptability and feasibility of a cell phone-based physical activity intervention in this population, this 6-week pilot study enrolled 13 persons living in permanent supportive housing. Participants were eligible if they had completed their final, 12-month follow-up interview in a larger, longitudinal study of persons moving into permanent supportive housing in the Los Angeles area, spoke English, and reported comorbid chronic physical and mental health conditions. For the study duration, participants wore a pedometer, received multiple weekly motivational text messages on set days (at times selected by the participant), and responded via text to weekly depression screeners and requests to report their weekly step totals, as recorded by their pedometers. Follow-up interviews asked open-ended questions about study participation and satisfaction. Results Participants were 53 years old on average, most were female (54%), and most were African-American (62%). Changes to people’s physical activity levels were limited, but participants reported increased quality of life during the intervention period. Interviews revealed that the intervention was well received and enjoyable for participants. Conclusions The efficacy of utilizing cell phones to improve health and wellbeing among adults living in permanent supportive housing requires further research, but these pilot findings suggest that such interventions are feasible and acceptable.

Background: Cerebral hemispherectomy is typically used to treat patients with pharmacoresistant epilepsy. Visual-related outcomes are relatively unstudied in this population, aside from the knowledge that patients develop a complete homonymous hemianopia contralateral to the side of the hemispherectomy. The purpose of this study was to determine and characterize parent-reported functional visual, oculomotor, and postural changes in a large population of patients following cerebral hemispherectomy. Methods: An online survey was sent to parents of children who had undergone hemispherectomy for seizure control. Families were recruited by the Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Parent-reported subjective visual function was assessed by the presence of peripheral field defects, ocular misalignment and anomalous head posture. Results: A total of 196 (12.5%) participants responded. Postoperative follow-up was 92±78 months (range: 1-382). Ninety-three percent of parents reported the child had difficulties with peripheral vision. Torticollis was present postoperatively in 122 (62%) patients. Strabismus was noted in 93 (49%). Fifty-five (59%) of the strabismus patients demonstrated exotropia with the majority of exotropia patients demonstrating the exo-deviated eye in the direction contralateral to the hemispherectomy (74.5%). Both torticollis and strabismus were most frequently seen immediately after surgery. Sixty-six patients (34%) underwent strabismus treatment. Patients with younger age of seizure onset, younger age of surgery, and certain epilepsy etiologies (hemimegencephaly, Sturge-Weber syndrome) were more likely to develop strabismus and torticollis. Conclusions: Torticollis and strabismus are common after hemispherectomy and appear to be influenced by etiology and age at surgery. Preoperative discussion with parents and patients regarding those compensatory mechanisms is recommended, and postoperative ophthalmologic assessments are also encouraged.