The effects of educational interventions and the COVID-19 pandemic on the time to diagnosis in pediatric patients with primary central nervous system tumors.

Background: Primary central nervous system tumors are a leading cause of death and disability amongst pediatric cancer patients. Akron Children's Hospital published data in 2018 on response time for brain tumor diagnosis and implemented components of an established program to decrease diagnostic delays and thereby reduce tumor- and treatment-related morbidities. This study evaluates if there was an improvement in the total diagnostic interval (TDI, time from symptom onset to diagnosis) after provider education. During the study, the COVID-19 pandemic forced alterations in care delivery. The impact this had on the TDI was also assessed. Methods: A retrospective chart review was performed, and patients were separated into 2008-2017 (historical) and 2018-2021 (posteducation) groups to assess the effect of educational interventions on TDI. The posteducation cohort was analyzed separately to assess the impact of COVID-19 pandemic. Results: The 85 patients studied in the post-education group showed a median TDI of 31 days. Though not statistically significant (P = .939), this represents an 11-day decrease in median TDI compared to the historical group (42 days). In addition, the posteducation group showed an increase in the average number of healthcare provider visits (HCP, 2.4 historical to 3.2 posteducation, P = .009). The pre-COVID-19 group (median TDI 43.5 days) did not differ statistically from the post-COVID-19 group (30-day median TDI). Conclusion: The nonsignificant decrease in TDI and concurrent increase in HCP visits after implementation of education suggests a potential gap amongst providers in working-up primary CNS tumors. These results will influence expansion of education to further improve TDI.

Fulfilling 6 Domains of Health Care Quality: A Qualitative Parental Caregiver Study of Pediatric Telehealth During a Pandemic.

Using qualitative methods, we examine telehealth care quality from the perspective of parents of pediatric patients during a pandemic. We fill a gap in the literature essential for measuring effectiveness of pediatric telehealth. A total of 22 participants (n = 21 female; n = 1 male) enrolled in 1 of 9 interviews and focus groups conducted in 2021. Transcribed data were thematically analyzed and organized based on the 6 domains of quality health care by the Institute of Medicine (IOM). Analyzed data revealed 7 themes and 52 codes. Pediatric telehealth visits were perceived as efficient, timely, safe, and generally effective by parents for their child's health care. Participants experienced equal or greater time with their child's care provider via telehealth than through in-person visits. Qualitative results directly align with IOM domains of quality health care and contribute to the growing literature and evidence that may lead to improved telehealth outcomes and better preparedness for emergent public health events.

Understanding Drivers of Telemedicine in Pediatric Medical Care.

Purpose: As the demand for telemedicine services continues, greater knowledge about health care delivery preferences can inform high quality, efficient care. The present study sought to evaluate patient and family characteristics that may influence telemedicine utilization, particularly the choice between telephone and video telemedicine visits. Methods: This is a single-site cross-sectional, mixed methods study aimed at identifying factors associated with use of telephone and video telemedicine visits with pediatric patients and their families. Results: Seven hundred seventy-five (n = 775) caregivers completed a survey and 22 caregivers participated in follow-up focus groups and interviews. Findings indicate that female caregivers, those with higher education levels, and those with experience with technology were more likely to choose video telemedicine visits. Qualitative feedback provided several valuable recommendations based on patient/family experiences, which fell into four categories, including scheduling, accessibility, treatment resources, and care coordination. Conclusion: Findings demonstrate that previous experience, familiarity, and technology access may be important drivers in health care modality preference. Key elements that emerged relevant to user satisfaction and overall quality of the telemedicine experience: caregiver choice on visit type (telemedicine vs. in-person), child health care needs, and telemedicine education/training. As society moves toward pay-per-performance and value-based reimbursement, it is imperative that we focus on experience, health care needs, and training to improve patient experience and lower health care costs.

Survey of Telemedicine by Pediatric Nephrologists During the COVID-19 Pandemic.

INTRODUCTION: The slow increase in use of telemedicine began to expand rapidly, along with reimbursement changes, during the coronavirus disease-2019 (COVID-19) pandemic. Standardized protocols for these services are lacking but are needed for effective and equitable health care. In this study, we queried pediatric nephrologists and their patients about their telemedicine experiences during the pandemic. METHODS: Surveys that were in compliance with the Health Insurance Portability and Accountability Act were deployed online to patients and physicians. RESULTS: We collected survey responses from 400 patients and 197 pediatric nephrologists. Patients reported positive experiences with telemedicine visits as it was logistically easier than in-person visits. Patients also felt that the quality of their visits were equivalent to what they would receive in person. Physicians used a wide variety of online systems to conduct synchronous telemedicine with Zoom (23%), EPIC (9%), Doxy.me (7%), services not specified (37%), or a mix of local or smaller services (24%). Most physicians' concerns were related to technological issues and the ability to procure physical exams and/or laboratory results. CONCLUSIONS: There is a paucity of published trials on telemedicine services in pediatric nephrology. Virtual care was feasible and acceptable for patients, caregivers, and providers during the COVID-19 pandemic.

Telemedicine for Pediatric Nephrology: Perspectives on COVID-19, Future Practices, and Work Flow Changes.

Although the use of telemedicine in rural areas has increased steadily over the years, its use was rapidly implemented during the onset of the coronavirus disease 2019 (COVID-19) crisis. Due to this rapid implementation, there is a lack of standardized work flows to assess and treat for various nephrotic conditions, symptoms, treatment modalities, and transition processes in the pediatric population. To provide a foundation/suggestion for future standardized work flows, the authors of this report have developed standardized work flows using the Delphi method. These work flows were informed based on results from cross-sectional surveys directed to patients and providers. Most patients and providers were satisfied, 87% and 71%, respectively, with their telemedicine visits. Common issues that were raised with the use of telemedicine included difficulty procuring physical laboratory results and a lack of personal warmth during telemedicine visits. The work flows created based on these suggestions will both enhance safety in treating patients and allow for the best possible care.

Characterizing temporal genomic heterogeneity in pediatric low-grade gliomas.

Recent discoveries have provided valuable insight into the genomic landscape of pediatric low-grade gliomas (LGGs) at diagnosis, facilitating molecularly targeted treatment. However, little is known about their temporal and therapy-related genomic heterogeneity. An adequate understanding of the evolution of pediatric LGGs' genomic profiles over time is critically important in guiding decisions about targeted therapeutics and diagnostic biopsy at recurrence. Fluorescence in situ hybridization, mutation-specific immunohistochemistry, and/or targeted sequencing were performed on paired tumor samples from primary diagnostic and subsequent surgeries. Ninety-four tumor samples from 45 patients (41 with two specimens, four with three specimens) from three institutions underwent testing. Conservation of BRAF fusion, BRAFV600E mutation, and FGFR1 rearrangement status was observed in 100%, 98%, and 96% of paired specimens, respectively. No loss or gain of IDH1 mutations or NTRK2, MYB, or MYBL1 rearrangements were detected over time. Histologic diagnosis remained the same in all tumors, with no acquired H3K27M mutations or malignant transformation. Changes in CDKN2A deletion status at recurrence occurred in 11 patients (42%), with acquisition of hemizygous CDKN2A deletion in seven and loss in four. Shorter time to progression and shorter time to subsequent surgery were observed among patients with acquired CDKN2A deletions compared to patients without acquisition of this alteration [median time to progression: 5.5 versus 16.0 months (p = 0.048); median time to next surgery: 17.0 months versus 29.0 months (p = 0.031)]. Most targetable genetic aberrations in pediatric LGGs, including BRAF alterations, are conserved at recurrence and following chemotherapy or irradiation. However, changes in CDKN2A deletion status over time were demonstrated. Acquisition of CDKN2A deletion may define a higher risk subgroup of pediatric LGGs with a poorer prognosis. Given the potential for targeted therapies for tumors harboring CDKN2A deletions, biopsy at recurrence may be indicated in certain patients, especially those with rapid progression.

Retrospective analysis of combination carboplatin and vinblastine for pediatric low-grade glioma.

INTRODUCTION: Low-grade glioma (LGG) represent the most common pediatric central nervous system tumor. When total surgical resection is not feasible, chemotherapy is first-line therapy in children. Multiple pediatric LGG chemotherapy regimens have been investigated with variable 2-year event free survival (EFS) rates of 39-69%. To date, treatment of pediatric LGG with a carboplatin and vinblastine (C/VBL) chemotherapy regimen has only been evaluated in a phase 1 dose-finding study. METHODS: A retrospective review of pediatric patients with LGG who were treated with C/VBL at Children's Hospital of Colorado or Akron Children's Hospital from 2011 to 2017 was conducted. Data collected included patient demographics, tumor location, disease response, neurofibromatosis 1 (NF1) status, therapy duration and toxicities. Response to therapy was determined by objective findings on imaging and treating physicians' evaluation. RESULTS: Forty-six patients were identified for analysis, all of whom were chemotherapy-naive. Only five patients treated in this cohort had NF1. BRAF fusion was identified in 65% (22/34) of tested tumors. Best therapy response was partial response in nine patients and stable disease in twenty-five patients. Twelve patients had progressive disease. One-year, 3-year, and 5-year EFS probabilities for all patients were 69.6%, 39.4%, and 34.5%, respectively. Nine patients had admissions for febrile neutropenia and seven patients experienced one delay in chemotherapy due to neutropenia. Only two patients had to discontinue this chemotherapy regimen because of treatment-related toxicities [carboplatin allergy (n = 1) and vinblastine neuropathy (n = 1)]. CONCLUSION: C/VBL achieves similar EFS rates to other single-agent and combination cytotoxic chemotherapy regimens for pediatric LGG with manageable toxicities.

The Chaplain Family Project: Development, Feasibility, and Acceptability of an Intervention to Improve Spiritual Care of Family Surrogates.

In the Intensive Care Unit (ICU), family members experience psychological and spiritual distress as they cope with fear, grief, and medical decisions for patients. The study team developed and pilot tested a semistructured chaplain intervention that included proactive contact and spiritual assessment, interventions, and documentation. An interdisciplinary team developed the intervention, the Spiritual Care Assessment and Intervention (SCAI) Framework. Three chaplains delivered the intervention to surrogates in two ICUs. There were 25 of 73 eligible patient/surrogate dyads enrolled. Surrogates had a mean age of 57.6, were 84% female and 32% African American. The majority (84%) were Protestant. All received at least one chaplain visit and 19 received three visits. All agreed they felt supported by the chaplains, and qualitative comments showed spiritual and emotional support were valued. A semistructured spiritual care intervention for ICU surrogates is feasible and acceptable. Future work is needed to demonstrate the intervention improves outcomes for surrogates and patients.

Inclusive engagement for health and development or 'political theatre': results from case studies examining mechanisms for country ownership in Global Fund processes in Malawi, Tanzania and Zimbabwe.

BACKGROUND: For many countries, including Malawi, Tanzania and Zimbabwe, 2017 was a transition year for support from the Global Fund to Fight AIDS, Tuberculosis and Malaria as one funding cycle closed and another would begin in 2018. Since its inception in 2001, the Global Fund has required that countries demonstrate ownership and transparency in the development of their funding requests through specific processes for inclusive, deliberative engagement led by Country Coordinating Mechanisms (CCMs). In reporting results from case study research, the article explores whether, in the context of the three countries, such requirements continue to be fit-for-purpose given difficult choices to be made for financing and sustaining their HIV programmes. RESULTS: The findings show how complex, competing priorities for limited resources increasingly strain processes for inclusive deliberation, a core feature of the Global Fund model. Each country has chosen expansion of HIV treatment programmes as its main strategy for epidemic control relying almost exclusively on external funding sources for support. This step has, in effect, pre-committed HIV funding, whether available or not, well into the future. It has also largely pre-empted the results of inclusive dialogue on how to allocate Global Fund resources. As a result, such processes may be entering the realm of 'political theatre,' or processes for processes' sake alone, rather than being important opportunities where critical decisions regarding priorities for national HIV programmes and how they are funded could or should be made. CONCLUSION: To address this, the Global Fund has begun an initiative to shore-up the capabilities of CCMs, with specialised technical and financial support, so that they can both grasp and influence the overall financing and sustainability of HIV programmes, rather than focussing on Global Fund programmes alone. What stronger CCMs could achieve, given the growing HIV-treatment-related commitments in these three countries, remains to be seen. Starting in 2020, the three countries will discover what resources the Global Fund will have for them for the 2021-2023 period. The resource needs for expanding HIV treatment programmes for this period are already foreseeable leaving few if any options for future deliberation should funding from the Global Fund and others not grow at a similar pace.

Diagnostic delay and morbidity of central nervous system tumors in children and young adults: a pediatric hospital experience.

INTRODUCTION: For children with central nervous system (CNS) tumors, survival rates remain significantly lower than other childhood malignancies with a substantial increase in disability of survivors. Given this, it is imperative that these children are identified at the earliest sign of symptom onset. Our institution aimed to identify diagnostic delays, morbidity and mortality, and specific barriers that may exist within our specific healthcare system that result in diagnostic delay. METHODS: A retrospective chart review was performed of newly diagnosed CNS tumors between January 1, 2008 and December 31, 2017. RESULTS: 235 patient cases were reviewed, 34 (14.5%) of which had an associated tumor predisposition syndrome. Median age at the time of diagnosis was 9 years (range 1 day to 25 years), with median number of days from symptom onset to definitive diagnosis of 42 days (interquartile range 14-120 days). Delays longer than 60 days occurred in 95 (47.5%) patients. The 10 year relative survival rate for all tumors was 86.8%. CONCLUSIONS: Our institution had a shorter interval from symptom onset to diagnosis than currently reported in the literature, as well as a decrease in associated morbidity. In addition, for those with longer delays, we were able to characterize the etiology and barriers leading to these delays. With these identified, we are able to utilize this knowledge to further improve education and awareness in community members and healthcare professionals to continue to improve the time to diagnosis in the future.

Comprehensive Genomic Profiling of 282 Pediatric Low- and High-Grade Gliomas Reveals Genomic Drivers, Tumor Mutational Burden, and Hypermutation Signatures.

BACKGROUND: Pediatric brain tumors are the leading cause of death for children with cancer in the U.S. Incorporating next-generation sequencing data for both pediatric low-grade (pLGGs) and high-grade gliomas (pHGGs) can inform diagnostic, prognostic, and therapeutic decision-making. MATERIALS AND METHODS: We performed comprehensive genomic profiling on 282 pediatric gliomas (157 pHGGs, 125 pLGGs), sequencing 315 cancer-related genes and calculating the tumor mutational burden (TMB; mutations per megabase [Mb]). RESULTS: In pLGGs, we detected genomic alterations (GA) in 95.2% (119/125) of tumors. BRAF was most frequently altered (48%; 60/125), and FGFR1 missense (17.6%; 22/125), NF1 loss of function (8.8%; 11/125), and TP53 (5.6%; 7/125) mutations were also detected. Rearrangements were identified in 35% of pLGGs, including KIAA1549-BRAF, QKI-RAF1, FGFR3-TACC3, CEP85L-ROS1, and GOPC-ROS1 fusions. Among pHGGs, GA were identified in 96.8% (152/157). The genes most frequently mutated were TP53 (49%; 77/157), H3F3A (37.6%; 59/157), ATRX (24.2%; 38/157), NF1 (22.2%; 35/157), and PDGFRA (21.7%; 34/157). Interestingly, most H3F3A mutations (81.4%; 35/43) were the variant K28M. Midline tumor analysis revealed H3F3A mutations (40%; 40/100) consisted solely of the K28M variant. Pediatric high-grade gliomas harbored oncogenic EML4-ALK, DGKB-ETV1, ATG7-RAF1, and EWSR1-PATZ1 fusions. Six percent (9/157) of pHGGs were hypermutated (TMB >20 mutations per Mb; range 43-581 mutations per Mb), harboring mutations deleterious for DNA repair in MSH6, MSH2, MLH1, PMS2, POLE, and POLD1 genes (78% of cases). CONCLUSION: Comprehensive genomic profiling of pediatric gliomas provides objective data that promote diagnostic accuracy and enhance clinical decision-making. Additionally, TMB could be a biomarker to identify pediatric glioblastoma (GBM) patients who may benefit from immunotherapy. IMPLICATIONS FOR PRACTICE: By providing objective data to support diagnostic, prognostic, and therapeutic decision-making, comprehensive genomic profiling is necessary for advancing care for pediatric neuro-oncology patients. This article presents the largest cohort of pediatric low- and high-grade gliomas profiled by next-generation sequencing. Reportable alterations were detected in 95% of patients, including diagnostically relevant lesions as well as novel oncogenic fusions and mutations. Additionally, tumor mutational burden (TMB) is reported, which identifies a subpopulation of hypermutated glioblastomas that harbor deleterious mutations in DNA repair genes. This provides support for TMB as a potential biomarker to identify patients who may preferentially benefit from immune checkpoint inhibitors.

"Drunkorexia": Understanding eating and physical activity behaviors of weight conscious drinkers in a sample of college students.

OBJECTIVE: Behaviors of weight conscious drinkers (BWCD) include disordered eating, excessive physical activity (PA), and heavy episodic drinking. Considering that approximately 25% of the college students report BWCD, it is important to investigate what characteristics increase the likelihood of college students engaged in BWCD for both moderate and vigorous PAs. PARTICIPANTS: A total of 510 college students were recruited from a large, public southeastern university. METHODS: Participants completed a cross-sectional survey during the spring 2015 semester. RESULTS: Of 510 respondents, 11.2% reported moderate PA-based BWCD and 14.7% reported vigorous PA-based BWCD. Weight loss intention, BMI and Greek affiliation predicted both moderate and vigorous BWCD. CONCLUSIONS: Study findings suggest that Greek-affiliated students and students with weight loss intentions might be at an increased risk for BWCD. Along with promoting lower levels of alcohol consumption, college practitioners should consider discussing issues of weight and body image with college students as they relate to maladaptive drinking behavior.

The Association of Smoking with English and Spanish Language Use as a Proxy of Acculturation Among Mexican-Americans.

To better characterize the relation of acculturation, based on language use, to smoking status among Mexican-Americans, a large study sample from an ongoing cohort of Mexican-American households in Texas was stratified into current smokers and non-smokers. Four language-use groups were created based on Low/High use of Spanish and English, representing different degrees of acculturation. Participants who reported high English but low Spanish use had the highest smoking prevalence (20.1 %), followed by High English/High Spanish (13.6 %), Low English/High Spanish (8.7 %), and Low English/Low Spanish (6.4 %). Current smokers were more likely to be male, have lower than high school education, currently consume alcohol or had consumed alcohol but quit, and report low Spanish/high English use. Consistent with recent models of acculturation, individuals can differ both in their maintenance of the native language and adoption of a new language and both dimensions are important in predicting tobacco use.

Mindfulness-Based Stress Reduction as a Stress Management Intervention for Cancer Care: A Systematic Review.

Cancer is acknowledged as a source of stress for many individuals, often leading to suffering, which can be long-lasting. Mindfulness-based stress reduction offers an effective way of reducing stress among cancer patients by combining mindfulness meditation and yoga in an 8-week training program. The purpose of this study was to inspect studies from October 2009 to November 2015 and examine whether mindfulness-based stress reduction can be utilized as a viable method for managing stress among cancer patients. A systematic search from Medline, CINAHL, and Alt HealthWatch databases was conducted for quantitative articles involving mindfulness-based stress reduction interventions targeting cancer patients. A total of 13 articles met the inclusion criteria. Of these 13 studies, 9 demonstrated positive changes in either psychological or physiological outcomes related to anxiety and/or stress, with 4 describing mixed results. Despite the limitations, mindfulness-based stress reduction appears to be promising for stress management among cancer patients.

Mindfulness-based stress reduction for healthy individuals: A meta-analysis.

BACKGROUND: An increasing number of mindfulness-based stress reduction (MBSR) studies are being conducted with nonclinical populations, but very little is known about their effectiveness. OBJECTIVE: To evaluate the efficacy, mechanisms of actions, and moderators of MBSR for nonclinical populations. DATA SOURCES: A systematic review of studies published in English journals in Medline, CINAHL or Alt HealthWatch from the first available date until September 19, 2014. STUDY SELECTION: Any quantitative study that used MBSR as an intervention, that was conducted with healthy adults, and that investigated stress or anxiety. RESULTS: A total of 29 studies (n=2668) were included. Effect-size estimates suggested that MBSR is moderately effective in pre-post analyses (n=26; Hedge's g=.55; 95% CI [.44, .66], p<.00001) and in between group analyses (n=18; Hedge's g=.53; 95% CI [.41, .64], p<.00001). The obtained results were maintained at an average of 19 weeks of follow-up. Results suggested large effects on stress, moderate effects on anxiety, depression, distress, and quality of life, and small effects on burnout. When combined, changes in mindfulness and compassion measures correlated with changes in clinical measures at post-treatment and at follow-up. However, heterogeneity was high, probably due to differences in the study design, the implemented protocol, and the assessed outcomes. CONCLUSIONS: MBSR is moderately effective in reducing stress, depression, anxiety and distress and in ameliorating the quality of life of healthy individuals; however, more research is warranted to identify the most effective elements of MBSR.

Mindfulness-based stress reduction as a stress management intervention for healthy individuals: a systematic review.

Stress is a global public health problem with several negative health consequences, including anxiety, depression, cardiovascular disease, and suicide. Mindfulness-based stress reduction offers an effective way of reducing stress by combining mindfulness meditation and yoga in an 8-week training program. The purpose of this study was to look at studies from January 2009 to January 2014 and examine whether mindfulness-based stress reduction is a potentially viable method for managing stress. A systematic search from Medline, CINAHL, and Alt HealthWatch databases was conducted for all types of quantitative articles involving mindfulness-based stress reduction. A total of 17 articles met the inclusion criteria. Of the 17 studies, 16 demonstrated positive changes in psychological or physiological outcomes related to anxiety and/or stress. Despite the limitations of not all studies using randomized controlled design, having smaller sample sizes, and having different outcomes, mindfulness-based stress reduction appears to be a promising modality for stress management.

Pediatric posterior fossa ganglioglioma: unique MRI features and correlation with BRAF V600E mutation status.

Ganglioglioma (GG) is a rare pediatric brain tumor (1-4 %) with neoplastic glial and neuronal cells. Posterior fossa GGs (PF GGs) occur less frequently than supratentorial GGs (ST GGs). The BRAF V600E mutation has been reported in GGs and carries therapeutic implications. We compare the presenting symptoms, magnetic resonance imaging, BRAF V600E mutation status, treatment, and prognosis in children with ST and PF GGs. The neuro-oncology database at a tertiary care Children's Hospital was retrospectively reviewed from 1995 to 2010 for patients with ST and PF GG. All available imaging was reviewed. Symptoms, BRAF V600E mutation status, treatment, and survival data were collected from the electronic medical record and analyzed. Our series consisted of 11 PF GG and 20 ST GG. Children with PF GG presented with ataxia, cranial nerve deficits and long tract signs whereas the majority with ST GGs presented with seizures. On imaging, PF GGs were infiltrative and expansile solid masses with dorsal predominant "paintbrush" enhancement whereas ST GGs were well circumscribed mixed solid and cystic masses with heterogeneous enhancement. Five of 11 (45%) PF GGs and 6 of 9 (67%) ST GGs expressed the BRAF V600E mutation. No unique imaging features were identified in BRAF V600E mutation positive tumors. The majority of ST GGs were treated with surgery alone, whereas the majority of PF GGs required multimodality therapy. PF GGs had worse progression-free survival and a higher mortality rate compared with ST GGs. Unlike ST GGs, PF GGs are expansile, infiltrative, show dorsal predominant "paintbrush" enhancement, are not amenable to gross total resection, and have worse progression-free survival and mortality.

Radiation-induced gliomas in 2 pediatric patients with neurofibromatosis type 1: case study and summary of the literature.

Neurofibromatosis type 1 (NF1) is a genetic disorder that predisposes patients to the formation of sporadic tumors and also increases the risk of radiation-induced malignancies. The most commonly described radiation-induced tumor in NF1 patients is a malignant peripheral nerve sheath tumor. We present 2 children with NF1 who received radiation therapy and subsequently developed high-grade gliomas. We then review the current literature on radiation-induced tumors in NF1 patients. Although radiation may be the most appropriate therapy in specific situations for children with NF1, the secondary tumor risk should be carefully considered.

Factors associated with medication adherence in patients with epilepsy and recommendations for improvement.

Although it is one of the most common neurological disorders, epilepsy continues to be a highly stigmatized and disabling chronic condition. Healthy People 2020 aims for improvement in the health-related quality of life and well-being of Americans, including these medically vulnerable patients. Efforts to research and improve medication adherence in this population and others with chronic conditions are an important step towards this end. The purpose of this study was to investigate factors associated with adherence and to provide recommendations for improvement. A cross-sectional survey research design was used in a convenience sample of patients receiving treatment at a tertiary epilepsy center. Adherence was measured by self-reported missed/skipped medication doses and seizure frequencies and by the presence of intractable seizures as indicated in patients' medical charts. Analysis was conducted with SPSS 21.0 on the data collected from the returned mailed surveys. Among the sample of 180 patients, most had some education beyond high school, household incomes of varying amounts, and health insurance coverage. Most of the participants were unemployed. Clinical records showed that 46% had intractable seizures. About 66% missed taking their medication on a monthly basis, with "forgetfulness" being the primary reason. Adherence (seizure frequency) was associated with being employed (P=.028). Adherence (complying with medication treatment plan) was also associated with "medication reminders" (P=.002) and educational attainment (P=.008). The findings indicate a continued need to explore the complex issue of adherence. The findings also highlight the need for health education and other public health and medical professionals to design effective strategies to connect patients with employment opportunities and other resources. Efforts are also needed to help provide information and build skills among patients with epilepsy that would lead to improved medication adherence and management.

Pediatric brainstem gangliogliomas show BRAF(V600E) mutation in a high percentage of cases.

Brainstem gangliogliomas (GGs), often cannot be resected, have a much poorer prognosis than those located in more common supratentorial sites and may benefit from novel therapeutic approaches. Therapeutically targetable BRAF c.1799T>A (p.V600E) (BRAF(V600E) ) mutations are harbored in roughly 50% of collective GGs taken from all anatomical sites. Large numbers of pediatric brainstem GGs, however, have not been specifically assessed and anatomic-and age-restricted assessment of genetic and biological factors are becoming increasingly important. Pediatric brainstem GGs (n = 13), non-brainstem GGs (n = 11) and brainstem pilocytic astrocytomas (PAs) (n = 8) were screened by standard Sanger DNA sequencing of BRAF exon 15. Five of 13 (38%) pediatric GG harbored a definitive BRAF(V600E) mutation, with two others exhibiting an equivocal result by this method. BRAF(V600E) was also seen in five of 11 (45%) non-brainstem GGs and one of eight (13%) brainstem PAs. VE1 immunostaining for BRAF(V600E) showed concordance with sequencing in nine of nine brainstem GGs including the two cases equivocal by Sanger. The equivocal brainstem GGs were subsequently shown to harbor BRAF(V600E) using a novel, more sensitive, RNA-sequencing approach, yielding a final BRAF(V600E) mutation frequency of 54% (seven of 13) in brainstem GGs. BRAF(V600E) -targeted therapeutics should be a consideration for the high percentage of pediatric brainstem GGs refractory to conventional therapies.