"My Home Away From Home": Community Support for International Pediatric and Young Adult Patients and Their Families in End-of-Life Care and Bereavement.

Background: Foreign national patients and families can face life-limiting illness and end-of-life care far from home; this palliative need has not been well described. Case Description: We present a case of a 20-year-old Ugandan patient diagnosed with metastatic alveolar rhabdomyosarcoma who presented to a pediatric academic medical center in California. Despite treatment, her disease progressed and she was unable to return to Uganda due to symptom burden. The patient and her family met regularly with palliative care during their hospital stay; the palliative approach included cross-cultural sharing, connecting across differences, and fostering community. The family additionally cultivated a support system within the hospital and local African communities. This was illustrated in the memory album the patient created, and in her family's extensive bereavement support. Conclusions: This case explores opportunities for individualized psychosocial care and community-based support to enhance palliative care for foreign national patients and families.

Identifying chemicals based on receptor binding/bioactivation/mechanistic explanation associated with potential to elicit hepatotoxicity and to support structure activity relationship-based read-across.

The liver is the most common target organ in toxicology studies. The development of chemical structural alerts for identifying hepatotoxicity will play an important role in in silico model prediction and help strengthen the identification of analogs used in structure activity relationship (SAR)- based read-across. The aim of the current study is development of an SAR-based expert-system decision tree for screening of hepatotoxicants across a wide range of chemistry space and proposed modes of action for clustering of chemicals using defined core chemical categories based on receptor-binding or bioactivation. The decision tree is based on âˆ¼ 1180 different chemicals that were reviewed for hepatotoxicity information. Knowledge of chemical receptor binding, metabolism and mechanistic information were used to group these chemicals into 16 different categories and 102 subcategories: four categories describe binders to 9 different receptors, 11 categories are associated with possible reactive metabolites (RMs) and there is one miscellaneous category. Each chemical subcategory has been associated with possible modes of action (MOAs) or similar key structural features. This decision tree can help to screen potential liver toxicants associated with core structural alerts of receptor binding and/or RMs and be used as a component of weight of evidence decisions based on SAR read-across, and to fill data gaps.

My Retina Tracker™: An On-line International Registry for People Affected with Inherited Orphan Retinal Degenerative Diseases and their Genetic Relatives - A New Resource.

My Retina Tracker™ is a new on-line registry for people affected with inherited orphan retinal degenerative diseases, and their unaffected, genetic relatives. Created and supported by the Foundation Fighting Blindness, it is an international resource designed to capture the disease from the perspective of the registry participant and their retinal health care providers. The registry operates under an Institutional Review Board (IRB)-approved protocol and allows sharing of de-identified data with participants, researchers and clinicians. All participants sign an informed consent that includes selecting which data they wish to share. There is no minimum age of participation. Guardians must sign on behalf of minors, and children between the ages of 12 to 17 also sign an informed assent. Participants may compare their disease to others in the registry using graphical interpretations of the aggregate registry data. Researchers and clinicians have two levels of access. The first provides an interface to interrogate all data fields registrants have agreed to share based on their answers in the IRB informed consent. The second provides a route to contact people in the registry who may be eligible for studies or trials, through the Foundation.

A strategy for safety assessment of chemicals with data gaps for developmental and/or reproductive toxicity.

Alternative methods for full replacement of in vivo tests for systemic endpoints are not yet available. Read across methods provide a means of maximizing utilization of existing data. A limitation for the use of read across methods is that they require analogs with test data. Repeat dose data are more frequently available than are developmental and/or reproductive toxicity (DART) studies. There is historical precedent for using repeat dose data in combination with a database uncertainty factor (UF) to account for missing DART data. We propose that use of the DART decision tree (Wu et al., 2013), in combination with a database UF, provides a path forward for DART data gap filling that better utilizes all of the data. Our hypothesis was that chemical structures identified by the DART tree as being related to structures with known DART toxicity would potentially have lower DART NOAELs compared to their respective repeat dose NOAELs than structures that lacked this association. Our analysis supports this hypothesis and as a result also supports that the DART decision tree can be used as part of weight of evidence in the selection of an appropriate DART database UF factor.

Moral distress among healthcare professionals: report of an institution-wide survey.

PURPOSE: Moral distress is a phenomenon affecting many professionals across healthcare settings. Few studies have used a standard measure of moral distress to assess and compare differences among professions and settings. DESIGN: A descriptive, comparative design was used to study moral distress among all healthcare professionals and all settings at one large healthcare system in January 2011. METHODS: Data were gathered via a web-based survey of demographics, the Moral Distress Scale-Revised (MDS-R), and a shortened version of Olson's Hospital Ethical Climate Scale (HECS-S). FINDINGS: Five hundred ninety-two (592) clinicians completed usable surveys (22%). Moral distress was present in all professional groups. Nurses and other professionals involved in direct patient care had significantly higher moral distress than physicians (p = .001) and other indirect care professionals (p < .001). Moral distress was negatively correlated with ethical workplace climate (r = -0.516; p < .001). Watching patient care suffer due to lack of continuity and poor communication were the highest-ranked sources of moral distress for all professional groups, but the groups varied in other identified sources. Providers working in adult or intensive care unit (ICU) settings had higher levels of moral distress than did clinicians in pediatric or non-ICU settings (p < .001). Providers who left or considered leaving a position had significantly higher moral distress levels than those who never considered leaving (p < .001). Providers who had training in end-of-life care had higher average levels of moral distress than those without this training (p = .005). CONCLUSIONS: Although there may be differences in perspectives and experiences, moral distress is a common experience for clinicians, regardless of profession. CLINICAL RELEVANCE: Moral distress is associated with burnout and intention to leave a position. By understanding its root causes, interventions can be tailored to minimize moral distress with the ultimate goal of enhancing patient care, staff satisfaction, and retention.

Narrative processing in typically developing children and children with early unilateral brain injury: seeing gesture matters.

Narrative skill in kindergarteners has been shown to be a reliable predictor of later reading comprehension and school achievement. However, we know little about how to scaffold children's narrative skill. Here we examine whether the quality of kindergarten children's narrative retellings depends on the kind of narrative elicitation they are given. We asked this question with respect to typically developing (TD) kindergarten children and children with pre- or perinatal unilateral brain injury (PL), a group that has been shown to have difficulty with narrative production. We compared children's skill in retelling stories originally presented to them in 4 different elicitation formats: (a) wordless cartoons, (b) stories told by a narrator through the auditory modality, (c) stories told by a narrator through the audiovisual modality without co-speech gestures, and (e) stories told by a narrator in the audiovisual modality with co-speech gestures. We found that children told better structured narratives in response to the audiovisual + gesture elicitation format than in response to the other 3 elicitation formats, consistent with findings that co-speech gestures can scaffold other aspects of language and memory. The audiovisual + gesture elicitation format was particularly beneficial for children who had the most difficulty telling a well-structured narrative, a group that included children with larger lesions associated with cerebrovascular infarcts.

Framework for identifying chemicals with structural features associated with the potential to act as developmental or reproductive toxicants.

Developmental and reproductive toxicity (DART) end points are important hazard end points that need to be addressed in the risk assessment of chemicals to determine whether or not they are the critical effects in the overall risk assessment. These hazard end points are difficult to predict using current in silico tools because of the diversity of mechanisms of action that elicit DART effects and the potential for narrow windows of vulnerability. DART end points have been projected to consume the majority of animals used for compliance with REACH; thus, additional nonanimal predictive tools are urgently needed. This article presents an empirically based decision tree for determining whether or not a chemical has receptor-binding properties and structural features that are consistent with chemical structures known to have toxicity for DART end points. The decision tree is based on a detailed review of 716 chemicals (664 positive, 16 negative, and 36 with insufficient data) that have DART end-point data and are grouped into defined receptor binding and chemical domains. When tested against a group of chemicals not included in the training set, the decision tree is shown to identify a high percentage of chemicals with known DART effects. It is proposed that this decision tree could be used both as a component of a screening system to identify chemicals of potential concern and as a component of weight-of-evidence decisions based on structure-activity relationships (SAR) to fill data gaps without generating additional test data. In addition, the chemical groupings generated could be used as a starting point for the development of hypotheses for in vitro testing to elucidate mode of action and ultimately in the development of refined SAR principles for DART that incorporate mode of action (adverse outcome pathways).

Does linguistic input play the same role in language learning for children with and without early brain injury?

Children with unilateral pre- or perinatal brain injury (BI) show remarkable plasticity for language learning. Previous work highlights the important role that lesion characteristics play in explaining individual variation in plasticity in the language development of children with BI. The current study examines whether the linguistic input that children with BI receive from their caregivers also contributes to this early plasticity, and whether linguistic input plays a similar role in children with BI as it does in typically developing (TD) children. Growth in vocabulary and syntactic production is modeled for 80 children (53 TD, 27 BI) between 14 and 46 months. Findings indicate that caregiver input is an equally potent predictor of vocabulary growth in children with BI and in TD children. In contrast, input is a more potent predictor of syntactic growth for children with BI than for TD children. Controlling for input, lesion characteristics (lesion size, type, seizure history) also affect the language trajectories of children with BI. Thus, findings illustrate how both variability in the environment (linguistic input) and variability in the organism (lesion characteristics) work together to contribute to plasticity in language learning.

Pellet formulations of sex pheromone components for mating disruption of oriental beetle (Coleoptera: Scarabaeidae) in turfgrass.

Wax-based pelleted sex pheromone formulations were tested for efficacy in managing oriental beetle, Anomala orientalis Waterhouse, in turfgrass. Four pellet formulations were field tested at 25 g pheromone/ha during 2006 and 2007. Application patterns included pellets specifically placed in a uniform grid pattern and pellets scattered by a broadcast spreader. Treatment efficacy was measured by monitoring male A. orientalis captures in pheromone-baited traps, determining mating success of confined virgin females, and estimating subsequent densities of A. orientalis larvae in soil/sod samples. All formulation and application pattern combinations effectively suppressed mating for 2 wk after application as measured by reduction in male trap captures and mating success of confined virgins. Two formulations gradually lost efficacy beginning 2 wk after application and the two others after 3-4 wk. Application pattern had no effect on trap captures. The most effective formulation reduced trap captures by >/=90% for 36 d, reduced mating success of confined females by 86-100% until 24 d after treatment, and reduced A. orientalis larval populations by 69%. In a previous study, sprayable formulations resulted in nuisance contamination of shoes that attracted male beetles outside of pheromone-treated areas. In contrast, shoes walked through pellet-treated areas did not attract male beetles. Pellet formulations have great potential for A. orientalis mating disruption, but more research is needed to optimize performance.

Words and maps: developmental changes in mental models of spatial information acquired from descriptions and depictions.

People acquire spatial information from many sources, including maps, verbal descriptions, and navigating in the environment. The different sources present spatial information in different ways. For example, maps can show many spatial relations simultaneously, but in a description, each spatial relation must be presented sequentially. The present research investigated how these source differences influence the mental models that children and adults form of the presented information. In Experiment 1, 8-year-olds, 10-year-olds and adults learned the layout of a six-room space either from verbal descriptions or from a map. They then constructed the configuration and pointed to target locations. Participants who learned from the map performed significantly better than those who learned from the description. Ten-year-olds performed nearly as well as adults did. The 8-year-olds' mental models differed substantially from the older children's and adults' mental models. The younger children retained the sequential information but did not integrate the relations into a survey-like cognitive map. Experiment 2 demonstrated that viewing the shape of the configuration, without seeing the map in full, could facilitate 8-year-olds' use of the verbal information and their ability to integrate the locations. The results demonstrate developmental differences in the mental representation of spatial information from descriptions. In addition, the results reveal that maps and other graphic representations can facilitate children's spatial thinking by helping them to transcend the sequential nature of language and direct experience.

Habitat avoidance: overlooking an important aspect of host-specific mating and sympatric speciation?

Understanding speciation requires discerning how reproductive barriers to gene flow evolve between previously interbreeding populations. Models of sympatric speciation for phytophagous insects posit that reproductive isolation can evolve in the absence of geographic isolation as a consequence of an insect shifting and ecologically adapting to a new host plant. One important adaptation contributing to sympatric differentiation is host-specific mating. When organisms mate in preferred habitats, a system of positive assortative mating is established that facilitates sympatric divergence. Models of host fidelity generally assume that host choice is determined by the aggregate effect of alleles imparting positive preferences for different plant species. But negative effect genes for avoiding nonnatal plants may also influence host use. Previous studies have shown that apple and hawthorn-infesting races of Rhagoletis pomonella flies use volatile compounds emitted from the surface of fruit as key chemosensory cues to recognize and distinguish between their host plants. Here, we report results from field trials indicating that in addition to preferring the odor of their natal fruit, apple and hawthorn flies, and their undescribed sister species infesting flowering dogwood (Cornus florida), also avoid the odors of nonnatal fruit. We discuss the implications of nonnatal fruit avoidance for the evolutionary dynamics and genetics of sympatric speciation. Our findings reveal an underappreciated role for habitat avoidance as a potential postmating, as well as prezygotic, barrier to gene flow.

Immunophenotype of blood lymphocytes in neuroblastoma-associated opsoclonus-myoclonus.

OBJECTIVE: To determine whether the distribution of peripheral blood mononuclear cells (PBMCs) is altered in paraneoplastic opsoclonus-myoclonus (POM). METHODS: PBMCs from 17 children with POM, 17 children with OM but no tumor, and 17 controls were immunophenotyped using a comprehensive panel of surface markers by dual-laser flow cytometry. All groups were matched for age and gender; POM and OM patients were matched for treatment. RESULTS: In the POM patients, the CD4+ T-cell subset was smaller in both relative size (-18%, P = 0.02) and absolute size (-41%, P = 0.03) compared with controls. The CD4/CD8 ratio also was less (-29% to -44%) and was related to POM duration (P = 0.03). The absolute but not relative size of the gammadelta T-cell subset was reduced (-44%, P = 0.02). There were no significant abnormalities of CD19+ B-cells, CD3- or CD3+ NK cells, HLA-DR+ or CD25+ T-cells, or CD45RA+ or CD45RO+ T-cells. Prior tumor chemotherapy, which was associated with a higher percentage but not number of CD8+ T-cells, did not restore the CD4+ T-cell subset. When the POM and OM groups, which were not significantly different, were combined, chemotherapy decreased both the relative and absolute size of the CD19+ B-cell pool and had small effects on other lymphocyte subsets. CONCLUSIONS: POM is characterized by T-cell abnormalities of PBMCs, the most robust of which is reduction of the CD4+ T-cell subset and the CD4/CD8 ratio. Although this reduction was found previously in cerebrospinal fluid in POM patients, PBMC subsets did not otherwise reflect cerebrospinal fluid abnormalities. Longitudinal studies will be necessary to determine whether PBMC abnormalities could serve as treatment markers.