Three-year Trajectories of Global Perceived Quality of Life for Youth With Chronic Health Conditions

Purpose Objectives of this longitudinal study were to examine 3-year trajectories of global perceived quality of life (QOL) for youth with chronic health conditions, as obtained from youth and parent reports, and to identify personal and environmental factors associated with the trajectory groups for each perspective. Methods Youth with various chronic conditions aged 11–17 years and one of their parents were recruited from eight children’s treatment centers. Latent class growth analysis was used to investigate perceived QOL trajectories (separately for youth and parent perspectives) over a 3-year period (four data collection time points spaced 12 months apart). Multinomial logistic regression was employed to identify factors associated with these trajectories. Results A total of 439 youth and one of their parents participated at baseline, and 302 (69 %) of those youth/parent dyads completed all four data collection time points. Two QOL trajectories were identified for the youth analysis: ‘high and stable’ (85.7 %) and ‘moderate/low and stable’ (14.3 %), while three trajectories were found for the parent analysis: ‘high and stable’ (35.7 %), ‘moderate and stable’ (46.6 %), and ‘moderate/low and stable’ (17.7 %). Relative to the ‘high and stable’ groups, youth with more reported pain/other physical symptoms, emotional symptoms, and home/community barriers were more likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups. Also, youth with higher reported self-determination, spirituality, family social support, family functioning, school productivity/engagement, and school belongingness/safety were less likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups, compared to the ‘high and stable’ groups. Conclusion Findings suggest that youth with chronic conditions experience stable global perceived QOL across time, but that some individuals maintain stability at moderate to moderate/low levels which is related to ongoing personal and environmental influences. Potential benefits of universal strategies and programs to safeguard resilience for all youth and targeted interventions to optimize certain youths’ global perceived QOL are indicated

The Concussion Challenge Assessment: Development and reliability of a novel gross motor assessment tool for paediatric concussion

AimsThe aim of this study was to develop a gross motor performance clinical assessment tool, the Concussion Challenge Assessment (CCA), for paediatric concussion populations.MethodsAn expert panel evaluated tasks from the Acquired Brain Injury Challenge Assessment to determine relevant tasks for a paediatric concussion population. These tasks were administered to a convenience sample of 854 healthy youth. An analysis of the response options for each task, considering task difficulty, was performed. The test–retest reliability of each task was considered to finalise the tool.ResultsThe Acquired Brain Injury Challenge Assessment was reduced to six tasks (three coordination, two speed and agility, and one strength) to create the CCA. Population-specific 4-point response options were generated, which, upon examination of task difficulty, were revised as 5-point response sets to better capture performance differences. The test–retest reliability results led to acceptance of all six: three performance tasks and three exertion tasks.ConclusionThis development of the CCA is an important step in creating a gross motor performance assessment tool that can assist in the determination of when youth are able to safely return to activity following a concussion

Eficiencia in vitro de antagonistas de Sclerotinia Sclerotiorum y Sclerotinia Minor

p.109-116Dos aislam ientos de Trichoderma koningii (Tki y Tk2) y uno de Trichoderma viride (Tv) fueron probados in vitro como posibles antagonistas de Sclerotinia sclerotiorum y Sclerotinia minor a través de la técnica del cultivo dual, la que permite realizar una selección preliminar de antagonistas individuales, para ser probados en invernáculo y campo. De los análisis efectuados se concluye que, para las condiciones del ensayo, el aislam iento Tk2 de Trichoderma koningii muestra una mayor eficiencia como antagonista de Sclerotinia sclerotiorum y Sclerotinia minor en relación a los otros dos microorganismos, dado que es el aislam iento que mostró el más rápido crecimiento inicial, que mantuvo un ritmo de crecimiento nunca inferior al de los otros antagonistas y que en todos los casos colonizó totalmente la superficie cubierta por los patógenos. El comportamiento de los antagonistas a través del tiempo fue descripto utilizando un modelo de crecimiento no lineal del tipo logístico

The HIPASS Catalogue - II. Completeness, Reliability, and Parameter Accuracy

The HI Parkes All Sky Survey (HIPASS) is a blind extragalactic HI 21-cm emission line survey covering the whole southern sky from declination -90 to +25. The HIPASS catalogue (HICAT), containing 4315 HI-selected galaxies from the region south of declination +2, is presented in Meyer et al. (2004a, Paper I). This paper describes in detail the completeness and reliability of HICAT, which are calculated from the recovery rate of synthetic sources and follow-up observations, respectively. HICAT is found to be 99 per cent complete at a peak flux of 84 mJy and an integrated flux of 9.4 Jy km/s. The overall reliability is 95 per cent, but rises to 99 per cent for sources with peak fluxes >58 mJy or integrated flux > 8.2 Jy km/s. Expressions are derived for the uncertainties on the most important HICAT parameters: peak flux, integrated flux, velocity width, and recessional velocity. The errors on HICAT parameters are dominated by the noise in the HIPASS data, rather than by the parametrization procedure.Comment: Accepted for publication in MNRAS. 12 pages, 11 figures. Paper with higher resolution figures can be downloaded from http://hipass.aus-vo.or

Ectodermal dysplasias: Classification and organization by phenotype, genotype and molecular pathway

An international advisory group met at the National Institutes of Health in Bethesda, Maryland in 2017, to discuss a new classification system for the ectodermal dysplasias (EDs) that would integrate both clinical and molecular information. We propose the following, a working definition of the EDs building on previous classification systems and incorporating current approaches to diagnosis: EDs are genetic conditions affecting the development and/or homeostasis of two or more ectodermal derivatives, including hair, teeth, nails, and certain glands. Genetic variations in genes known to be associated with EDs that affect only one derivative of the ectoderm (attenuated phenotype) will be grouped as non‐syndromic traits of the causative gene (e.g., non‐syndromic hypodontia or missing teeth associated with pathogenic variants of EDA “ectodysplasin”). Information for categorization and cataloging includes the phenotypic features, Online Mendelian Inheritance in Man number, mode of inheritance, genetic alteration, major developmental pathways involved (e.g., EDA, WNT “wingless‐type,” TP63 “tumor protein p63”) or the components of complex molecular structures (e.g., connexins, keratins, cadherins)

R2Play development: Fostering user-driven technology that supports return-to-play decision-making following pediatric concussion

ObjectiveTo design a multi-domain return-to-play assessment system (R2Play) for youth athletes with concussion.MethodsThe R2Play system was developed using an overarching user-centered approach, the Design Thinking Framework, and research activities included: 1) structured brainstorming within our research team, 2) interviews with clinician and youth sports coaches, 3) building a testable prototype, and 4) interface testing through cognitive walkthroughs with clinician partners.ResultsClinician and coach participants provided feedback on the R2Play concept, which was integrated into the design process and provided future directions for research. Examples of feedback-driven design choices included reducing assessment time, increasing ecological validity by adding in background noise, and developing youth-friendly graphical results screens. Following refinement based on stakeholder feedback, the R2Play system was outlined in detail and a testable prototype was developed. It is made up of two parts: a clinician tablet, and a series of tablet “buttons” that display numbers and letters. Youth athletes run between the buttons to connect a “trail” in ascending alphanumeric order, 1-A-2-B, etc. Their performance across a series of levels of increasing difficulty is logged on the clinician tablet. Initial testing with five clinicians showed the system's interface to have excellent usability with a score of 81% (SD = 8.02) on the System Usability Scale.ConclusionThrough this research, a prototype of the R2Play system was innovated and evaluated by clinician and coach stakeholders. Initial usability was excellent and directions for future iterations were highlighted. Outcomes suggest the potential benefits of using technologies to assist in complex clinical assessment, as well as utilizing a user-centered approach to design

Factors Determining Nestedness in Complex Networks

Understanding the causes and effects of network structural features is a key task in deciphering complex systems. In this context, the property of network nestedness has aroused a fair amount of interest as regards ecological networks. Indeed, Bastolla et al. introduced a simple measure of network nestedness which opened the door to analytical understanding, allowing them to conclude that biodiversity is strongly enhanced in highly nested mutualistic networks. Here, we suggest a slightly refined version of such a measure of nestedness and study how it is influenced by the most basic structural properties of networks, such as degree distribution and degree-degree correlations (i.e. assortativity). We find that most of the empirically found nestedness stems from heterogeneity in the degree distribution. Once such an influence has been discounted – as a second factor – we find that nestedness is strongly correlated with disassortativity and hence – as random networks have been recently found to be naturally disassortative – they also tend to be naturally nested just as the result of chance.This work was supported by Junta de Andalucia projects FQM-01505 and P09-FQM4682, and by Spanish MEC-FEDER project FIS2009-08451. S.J. is grateful for financial support from the European Commision under the Marie Curie Intra-European Fellowship Programme PIEF-GA-2010-276454

Reimagining the potential of Earth observations for ecosystem service assessments

The benefits nature provides to people, called ecosystem services, are increasingly recognized and accounted for in assessments of infrastructure development, agricultural management, conservation prioritization, and sustainable sourcing. These assessments are often limited by data, however, a gap with tremendous potential to be filled through Earth observations (EO), which produce a variety of data across spatial and temporal extents and resolutions. Despite widespread recognition of this potential, in practice few ecosystem service studies use EO. Here, we identify challenges and opportunities to using EO in ecosystem service modeling and assessment. Some challenges are technical, related to data awareness, processing, and access. These challenges require systematic investment in model platforms and data management. Other challenges are more conceptual but still systemic; they are byproducts of the structure of existing ecosystem service models and addressing them requires scientific investment in solutions and tools applicable to a wide range of models and approaches. We also highlight new ways in which EO can be leveraged for ecosystem service assessments, identifying promising new areas of research. More widespread use of EO for ecosystem service assessment will only be achieved if all of these types of challenges are addressed. This will require non-traditional funding and partnering opportunities from private and public agencies to promote data exploration, sharing, and archiving. Investing in this integration will be reflected in better and more accurate ecosystem service assessments worldwide

Molecular pathway-based classification of ectodermal dysplasias: first five-yearly update

To keep pace with the rapid advancements in molecular genetics and rare diseases research, we have updated the list of ectodermal dysplasias based on the latest classification approach that was adopted in 2017 by an international panel of experts. For this purpose, we searched the databases PubMed and OMIM for the term “ectodermal dysplasia”, referring mainly to changes in the last 5 years. We also tried to obtain information about those diseases on which the last scientific report appeared more than 15 years ago by contacting the authors of the most recent publication. A group of experts, composed of researchers who attended the 8th International Conference on Ectodermal Dysplasias and additional members of the previous classification panel, reviewed the proposed amendments and agreed on a final table listing all 49 currently known ectodermal dysplasias for which the molecular genetic basis has been clarified, including 15 new entities. A newly reported ectodermal dysplasia, linked to the gene LRP6, is described here in more detail. These ectodermal dysplasias, in the strict sense, should be distinguished from syndromes with features of ectodermal dysplasia that are related to genes extraneous to the currently known pathways involved in ectodermal development. The latter group consists of 34 syndromes which had been placed on the previous list of ectodermal dysplasias, but most if not all of them could actually be classified elsewhere. This update should streamline the classification of ectodermal dysplasias, provide guidance to the correct diagnosis of rare disease entities, and facilitate the identification of individuals who could benefit from novel treatment options