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Introduction: Kabuki syndrome is a rare congenital condition characterized clinically by unique facial features, abnormalities in the skeleton, finger pad abnormalities, and developmental delays, as well as a range of other health issues. Existing research lacks information on the daily burden of living with Kabuki syndrome.Methods: A survey collected caregiver- and patient-reported data about the experience of living with Kabuki syndrome in order to better understand its presentation and effect on patients and their psychosocial well-being.Results: A total of 68 participants (n = 57 caregivers and n = 11 adolescents) were recruited from the USA and Canada. Caregiver survey participants reported developmental delays and lower IQ in individuals with Kabuki syndrome compared to the general population, as well as difficulty with cognitive-related tasks, need for educational accommodations, and difficulty with particular school subjects and with daily tasks. Additionally, participants reported significant emotional, social, and communication-related impacts of Kabuki syndrome. Adolescent data largely corroborated the information collected from caregivers, with the exception of adolescents reporting the emotional and social impacts as occurring less frequently.Conclusions: Kabuki syndrome is a multidimensional disease which has substantial negative effects on physical, mental, emotional, and social aspects of health-related quality of life. This research adds to the limited existing body of literature on the clinical presentation of Kabuki syndrome and provides a novel perspective into the caregiver and adolescent perception of the burden of Kabuki syndrome. [ABSTRACT FROM AUTHOR]

We present a case example of a school leader whose understanding of both in- and out-of-school policies and issues supported 2 students who experienced severe trauma. We describe some of the principal's key beliefs and practices that led to the development of a justice-oriented school, and then contextualize her work in a “social frontiers” perspective. We conclude by suggesting that, especially in contexts where poverty affects many students, school leaders must go beyond school walls to cultivate appropriately responsive systems of practice that allow all students to thrive. [ABSTRACT FROM PUBLISHER]

Background and Aim: Trigeminal neuralgia (TN) is a rare orofacial disorder characterized by severe unilateral paroxysmal pain in the region of the fifth cranial nerve. Clinical guidelines recommend carbamazepine (only US Food and Drug Administration-approved drug for TN) and oxcarbazepine as first-line therapies. We utilized the US Truven Health MarketScan database to examine treatment patterns among patients with TN., Methods: Included patients were aged 18 years and above, newly diagnosed with TN (≥2 TN diagnoses ≥14 days apart; no diagnosis in the previous year), continuously enrolled 1 year before index, with ≥3 years' follow-up postindex. We assessed utilization of selected pharmacotherapies (carbamazepine, oxcarbazepine, pregabalin, gabapentin, baclofen, duloxetine, topiramate), surgery (posterior fossa, radiosurgery), and injections (peripheral anesthetic injections, Gasserian ganglion procedures) for TN., Results: In total, 3685 patients were included (2425 commercial, 1260 Medicare; 71.8% female; age, mean [SD], 59 [15] y). Overall, 72.5% of patients received at least 1 studied medication, most commonly carbamazepine (51.7%) or gabapentin (48.6%). In total, 65% of pharmacologically treated patients had ≥2 treatment episodes; 41.6% had ≥3 (defined by a change in pharmacotherapy [monotherapy/combination] regimen). Overall, 12.3% had surgery and 7.3% injections; 42.9% received opioids for TN., Conclusions: In the 3 years after diagnosis, patients with TN in the United States receive a variety of pharmacological treatments, including opioids, despite carbamazepine being the only approved medication. A notable proportion utilize surgeries/injections. A high proportion of pharmacologically treated patients receive multiple treatment episodes, suggesting frequent therapy switching, perhaps because of suboptimal efficacy/tolerability. Our data suggest a high burden of illness associated with TN.