Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study.

PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

A nearby long gamma-ray burst from a merger of compact objects.

Gamma-ray bursts (GRBs) are flashes of high-energy radiation arising from energetic cosmic explosions. Bursts of long (greater than two seconds) duration are produced by the core-collapse of massive stars1, and those of short (less than two seconds) duration by the merger of compact objects, such as two neutron stars2. A third class of events with hybrid high-energy properties was identified3, but never conclusively linked to a stellar progenitor. The lack of bright supernovae rules out typical core-collapse explosions4-6, but their distance scales prevent sensitive searches for direct signatures of a progenitor system. Only tentative evidence for a kilonova has been presented7,8. Here we report observations of the exceptionally bright GRB 211211A, which classify it as a hybrid event and constrain its distance scale to only 346 megaparsecs. Our measurements indicate that its lower-energy (from ultraviolet to near-infrared) counterpart is powered by a luminous (approximately 1042 erg per second) kilonova possibly formed in the ejecta of a compact object merger.

Referral, Assessment and Use of Screening Measures Related to Autism Spectrum Disorder at a Tertiary Hospital Setting.

Children with developmental concerns in Australia continue to experience inequitable healthcare and service-related delays, even when diagnostic risk is identified. This study sought to explore service and demographic pathway factors leading up to autism spectrum disorder (ASD) assessment, including value of screening measures applied at triage. Following a trial of centralised intake for referred young children with suspected ASD, observational, retrospective pathway data was explored using bivariate and regression analyses. The mean age of 159 children referred with autism symptoms was 3.6 years, and 64% were diagnosed with ASD. Service allocation was associated with diagnosis, whilst screening tool results were not. Improved pathways are needed to limit wasted waiting times and direct each child to needs-based services.

Novel protein pathways in development and progression of pulmonary sarcoidosis.

Pulmonary involvement occurs in up to 95% of sarcoidosis cases. In this pilot study, we examine lung compartment-specific protein expression to identify pathways linked to development and progression of pulmonary sarcoidosis. We characterized bronchoalveolar lavage (BAL) cells and fluid (BALF) proteins in recently diagnosed sarcoidosis cases. We identified 4,306 proteins in BAL cells, of which 272 proteins were differentially expressed in sarcoidosis compared to controls. These proteins map to novel pathways such as integrin-linked kinase and IL-8 signaling and previously implicated pathways in sarcoidosis, including phagosome maturation, clathrin-mediated endocytic signaling and redox balance. In the BALF, the differentially expressed proteins map to several pathways identified in the BAL cells. The differentially expressed BALF proteins also map to aryl hydrocarbon signaling, communication between innate and adaptive immune response, integrin, PTEN and phospholipase C signaling, serotonin and tryptophan metabolism, autophagy, and B cell receptor signaling. Additional pathways that were different between progressive and non-progressive sarcoidosis in the BALF included CD28 signaling and PFKFB4 signaling. Our studies demonstrate the power of contemporary proteomics to reveal novel mechanisms operational in sarcoidosis. Application of our workflows in well-phenotyped large cohorts maybe beneficial to identify biomarkers for diagnosis and prognosis and therapeutically tenable molecular mechanisms.

Age and sex-related decline of muscle strength across the adult lifespan: a scoping review of aggregated data.

Muscle strength is sex-related and declines with advancing age; yet, a comprehensive comparative evaluation of age-related strength loss in human females and males has not been undertaken. To do so, segmented piecewise regression analysis was performed on aggregated data from studies published from 1990 to 2018 and are available in CINAHL, EMBASE, MEDLINE, and PsycINFO databases. The search identified 5613 articles that were reviewed for physical assessment results stratified by sex and age. Maximal isometric and isokinetic 60°·s-1 knee extension (KE) and knee flexion (KF) contractions from 57 studies and 15 283 subjects (N = 7918 females) had sufficient data reported on females and males for meaningful statistical evaluation to be undertaken. The analysis revealed that isometric KE and KF strength undergo similar rapid declines in both sexes late in the sixth decade of life. Yet, there is an abrupt age-related decline in KE 60°·s-1 peak torque earlier in females (aged 41.8 years) than males (aged 66.7 years). In the assessment of KF peak torque, an age-related acceleration in strength loss was only identified in males (aged 49.3 years). The results suggest that age-related isometric strength loss is similar between sexes while the characteristics of KE and KF peak torque decline are sex-related, which likely explains the differential rate of age-related functional decline. Novelty Inclusion of muscle strength and torque of KE and KF data from >15 000 subjects. Isometric KE and KF strength loss are similar between sexes. Isokinetic 60°·s-1 KE torque decline accelerates 25 years earlier in females and female age-related KF peak torque decline does not accelerate with age.

Standardizing Ecosystem Morphological Traits from 3D Information Sources.

3D-imaging technologies provide measurements of terrestrial and aquatic ecosystems' structure, key for biodiversity studies. However, the practical use of these observations globally faces practical challenges. First, available 3D data are geographically biased, with significant gaps in the tropics. Second, no data source provides, by itself, global coverage at a suitable temporal recurrence. Thus, global monitoring initiatives, such as assessment of essential biodiversity variables (EBVs), will necessarily have to involve the combination of disparate data sets. We propose a standardized framework of ecosystem morphological traits - height, cover, and structural complexity - that could enable monitoring of globally consistent EBVs at regional scales, by flexibly integrating different information sources - satellites, aircrafts, drones, or ground data - allowing global biodiversity targets relating to ecosystem structure to be monitored and regularly reported.

Mars Extant Life: What's Next? Conference Report.

On November 5-8, 2019, the "Mars Extant Life: What's Next?" conference was convened in Carlsbad, New Mexico. The conference gathered a community of actively publishing experts in disciplines related to habitability and astrobiology. Primary conclusions are as follows: A significant subset of conference attendees concluded that there is a realistic possibility that Mars hosts indigenous microbial life. A powerful theme that permeated the conference is that the key to the search for martian extant life lies in identifying and exploring refugia ("oases"), where conditions are either permanently or episodically significantly more hospitable than average. Based on our existing knowledge of Mars, conference participants highlighted four potential martian refugium (not listed in priority order): Caves, Deep Subsurface, Ices, and Salts. The conference group did not attempt to reach a consensus prioritization of these candidate environments, but instead felt that a defensible prioritization would require a future competitive process. Within the context of these candidate environments, we identified a variety of geological search strategies that could narrow the search space. Additionally, we summarized a number of measurement techniques that could be used to detect evidence of extant life (if present). Again, it was not within the scope of the conference to prioritize these measurement techniques-that is best left for the competitive process. We specifically note that the number and sensitivity of detection methods that could be implemented if samples were returned to Earth greatly exceed the methodologies that could be used at Mars. Finally, important lessons to guide extant life search processes can be derived both from experiments carried out in terrestrial laboratories and analog field sites and from theoretical modeling.

Clinical utility of portable electrophysiology to measure fatigue in treatment-naïve non-small cell lung cancer.

PURPOSE: Cancer-related fatigue (CRF) biology remains poorly understood. Responsible mechanisms may be central or peripheral and originate anywhere from the brain to muscle fiber. Objective measurement is complex and previously limited to specialized laboratories. Portable electroencephalography (EEG) and electromyography (EMG) may enhance objective measurement. This study evaluated the feasibility and acceptability of portable EMG-EEG in CRF assessment. METHODS: A prospective observational feasibility study compared ten outpatients with inoperable, treatment-naïve non-small cell lung cancer and CRF to ten healthy volunteers. All completed a sustained isometric hand-grip contraction at 30% maximal level until self-perceived exhaustion. 128-channel EEG and 2-channel EMG signals of forearm muscles were recorded. Device acceptability was evaluated by questionnaire. RESULTS: The task was evaluated in two stages; first and last 20 s. CRF cohort perceived exhaustion earlier than volunteers (mean 137 ± 76 s vs 208 ± 51 s). As fatigue progressed, EMG amplitude increased significantly (CRF p = 0.02; volunteers: p = 0.04) in both groups as did EMG beta band power (CRF p = 0.008; volunteers: p = 0.006). The increase was significantly less in CRF (amplitude p = 0.032; beta power: p = 0.014). EEG beta band power in the contralateral motor cortex increased significantly (CRF p = 0.03; volunteers: p = 0.019) in both cohorts but to greater extent (p = 0.024) in CRF. One hundred percent device acceptability was reported. CONCLUSIONS: A laboratory-based evaluation was successfully adapted to the outpatient setting during routine visits. High acceptability supports clinical utility. In CRF, a higher degree of cortical activation was required to drive a much lower level of muscle performance. This suggests impairment of both central and peripheral mechanisms in CRF.

The pathophysiology of cancer-related fatigue: current controversies.

Fatigue is one of the most common and debilitating cancer symptoms, and is associated with impaired quality of life. The exact pathophysiology of cancer-related fatigue (CRF) is poorly understood, but in any individual, it is likely multifactorial and involves inter-related cytokine, muscular, neurotransmitter, and neuroendocrine changes. Underlying CRF mechanisms proposed include central and peripheral hypotheses. Central mechanisms include hypotheses about cytokine dysregulation, hypothalamic-pituitary-adrenal-axis disruption, circadian rhythm disruption, serotonin, and vagal afferent nerve function while peripheral mechanisms include hypotheses about adenosine triphosphate and muscle contractile properties. Currently, these hypotheses are largely based on evidence from other conditions in which fatigue is characteristic. The purpose of this article is to provide a narrative review of the literature and present the current controversies in the pathophysiology of CRF, particularly in relation to central and peripheral hypotheses for CRF. An understanding of pathophysiology may facilitate direct and simple therapeutic interventions for those with cancer.

Optical modeling of fiber organic photovoltaic structures using a transmission line method.

An optical model has been developed and evaluated for the calculation of the external quantum efficiency of cylindrical fiber photovoltaic structures. The model is based on the transmission line theory and has been applied on single and bulk heterojunction fiber-photovoltaic cells. Using this model, optimum design characteristics have been proposed for both configurations, and comparison with experimental results has been assessed.

Subjective and objective taste and smell changes in cancer.

CONTEXT: Malnutrition is highly prevalent in cancer patients and an important predictor of morbidity, mortality, treatment response, and toxicity. Taste and smell changes (TSCs) are common and may contribute to malnutrition. Research has previously focused on patients receiving chemotherapy (CT) or head and neck radiotherapy (RT). However, TSCs may occur pre-treatment, with other treatment modalities, and in cancer survivors. This review evaluates objective and subjective assessment of taste and smell, discusses the prevalence of TSCs in cancer, and reviews the clinical sequelae of TSCs in cancer patients. OBJECTIVES: To critically evaluate objective and subjective assessment of TSCs, and the prevalence and clinical sequelae of TSCs in cancer. METHODS: A literature search was conducted using PubMed, CINAHL and Embase for English-language articles published January 2009-June 2016. Search terms included combinations of the following: chemosensory, taste, smell, cancer, chemotherapy, radiotherapy, hormone therapy, immunotherapy, survivors. Reference lists of articles retrieved were also reviewed. RESULTS: Variation in objective and subjective assessment methodologies has resulted in difficulties interpreting the literature. TSC prevalence varies depending on stage of disease and treatment regimens, from 16% to 70% and 50% to 70% during CT and RT, respectively. TSCs in patients who are treatment-naïve, receiving hormone or immunotherapy treatment, post-treatment and cancer survivors have not been adequately studied. TSCs are associated with impaired nutritional status. The relationship between cancer-associated symptoms and nutritional status is not clearly defined. CONCLUSION: There is no gold standard assessment tool for TSCs. Heterogeneity in study methods hinders conclusive identification of the most appropriate way to measure TSCs. Subjective measures may reflect the patient experience and more reliably predict changes in dietary behaviour. Evaluation of TSCs should form part of all nutritional assessments in cancer patients. The true prevalence and severity of TSCs at all stages of cancer could then be established.

Intrinsic coincident full-Stokes polarimeter using stacked organic photovoltaics.

An intrinsic coincident full-Stokes polarimeter is demonstrated by using strain-aligned polymer-based organic photovoltaics (OPVs) that can preferentially absorb certain polarized states of incident light. The photovoltaic-based polarimeter is capable of measuring four Stokes parameters by cascading four semitransparent OPVs in series along the same optical axis. This in-line polarimeter concept potentially ensures high temporal and spatial resolution with higher radiometric efficiency as compared to the existing polarimeter architecture. Two wave plates were incorporated into the system to modulate the S3 Stokes parameter so as to reduce the condition number of the measurement matrix and maximize the measured signal-to-noise ratio. Radiometric calibration was carried out to determine the measurement matrix. The polarimeter presented in this paper demonstrated an average RMS error of 0.84% for reconstructed Stokes vectors after normalized to S0. A theoretical analysis of the minimum condition number of the four-cell OPV design showed that for individually optimized OPV cells, a condition number of 2.4 is possible.

Medical students' understanding of oral and maxillofacial surgery: an Irish perspective.

Oral and Maxillofacial Surgery (OMFS) remains an enigmatic specialty in Irish medicine and many students are unaware of its scope and the unique career pathway involved. We completed a multicentre cross-sectional study to identify their ability to identify the requirements for entry to specialty training year 3 (ST3) in OMFS, to assess their awareness of OMFS surgeons, and their general awareness of, and exposure to, the specialty. Data were collected through an electronic questionnaire. Participants were asked to select the most suitable surgical specialty to treat a number of common conditions in the head and neck, and to choose the requirements they deemed essential for specialist training. Knowledge was measured by the number of correct responses. A total of 443 medical students participated (University College Cork (UCC) n=328, 74%; Royal College of Surgeons in Ireland (RCSI) n=113, 26%). A total of 318/374 (85%) had had no previous experience of OMFS, 38/374 (10%) had had theoretical teaching only, and 18/374 (5%) had had clinical experience. A total of 212/329 (64%) wished for greater exposure as a student, but only 34/329 (9%) would consider a career in the specialty. The median (IQR) number of correct responses for OMFS procedures was 3.0/10 (2.0), with women, direct entrants, and RCSI students scoring highest. Only 11/367 (3%) could identify the minimum entry requirements for a post of specialist registrar. This study has identified a potential gap in the undergraduate curriculum. Although medical students are rarely taught about OMFS, they show an interest in learning more.

Predictors of hepatotoxicity among patients treated with antituberculous medication.

INTRODUCTION: Hepatotoxicity in patients diagnosed with active tuberculosis (TB) is the commonest adverse effect of therapy. We sought to analyse trends in liver function in patients diagnosed with active TB and to determine predictors of hepatotoxicity. METHODS: We studied 275 patients with active TB treated at the Mercy University Hospital (Cork, Ireland) from 2009 to 2014 A retrospective review was undertaken of all patients' laboratory data and patient correspondence to determine predictors of hepatotoxicity. RESULTS: A total of 170 (62%) male and 105 (38%) female patients with active TB with a mean age of 44 years were studied. In total 15 patients (6%) required their medication to be stopped or altered as a consequence of hepatotoxicity. There was a significant difference in age between patients with hepatotoxicity (52.95 years) and those that didn't develop hepatotoxicity (41.33 years) ( P ≤ 0.01). Irish born patients were more likely to develop hepatotoxicity ( P = 0.025). There was no significant association between hepatotoxicity, illicit drug use ( P = 0.211), smoking ( P = 0.95), cavitatory disease ( P = 0.191), site of disease ( p = 0.224), alcohol use ( P = 0.088) or history of alcohol excess ( p = 0.736). Among patients with TB, peak AST values did not occur within the first 2 weeks as widely thought but later (week 10). CONCLUSION: Our study shows hepatotoxicity as a consequence of antituberculous therapy is common. Hepatotoxicity was more common in older patients and Irish born patients, and resulted in drug interruptions and treatment changes. Given the late peak in AST values at week 10 in patients treated with antituberculous therapy, the authors advocate that liver function tests should be monitored regularly throughout the course of treatment.

Intrinsic coincident linear polarimetry using stacked organic photovoltaics.

Polarimetry has widespread applications within atmospheric sensing, telecommunications, biomedical imaging, and target detection. Several existing methods of imaging polarimetry trade off the sensor's spatial resolution for polarimetric resolution, and often have some form of spatial registration error. To mitigate these issues, we have developed a system using oriented polymer-based organic photovoltaics (OPVs) that can preferentially absorb linearly polarized light. Additionally, the OPV cells can be made semitransparent, enabling multiple detectors to be cascaded along the same optical axis. Since each device performs a partial polarization measurement of the same incident beam, high temporal resolution is maintained with the potential for inherent spatial registration. In this paper, a Mueller matrix model of the stacked OPV design is provided. Based on this model, a calibration technique is developed and presented. This calibration technique and model are validated with experimental data, taken with a cascaded three cell OPV Stokes polarimeter, capable of measuring incident linear polarization states. Our results indicate polarization measurement error of 1.2% RMS and an average absolute radiometric accuracy of 2.2% for the demonstrated polarimeter.

Catching measles in an appropriately vaccinated group: a well-circumscribed outbreak in the South East of Ireland, September-November 2013.

A measles outbreak occurred in a school in a small town in the South East of Ireland in September-November 2013. Most (and all early) cases had one dose of the measles-mumps- rubella (MMR) vaccination. All suspected cases were followed up, in order to advise on sampling and provide public health advice to them and their contacts. MMR vaccination control measures were instituted in the town. These included early second MMR in primary schools and childcare facilities, bringing forward the planned school MMR catch-up programme, early first MMR dose for children aged 6-12 months and targeted advice to unvaccinated children. There were 20 cases (17 confirmed) of measles associated with the outbreak. Fifteen cases occurred in the index school, with four in pre-school-age children (<4 years) who had clear epidemiological links with children at the school. This was a well-circumscribed outbreak occurring, unusually, in a well-vaccinated population. The outbreak came late to the attention of Department of Public Health staff but prompt action, once notified, and institution of control measures resulted in quick termination of the outbreak and prevention of cases in a neighbouring city.

Subjective taste and smell changes in treatment-naive people with solid tumours.

PURPOSE: Taste and smell changes (TSCs) are common in head and neck (H&N) cancer and during and after chemotherapy (CT) and radiotherapy (RT). It is an area that has been under-investigated, particularly in the treatment-naive, but can negatively impact nutritional status. This study examined the prevalence, severity and characteristics of TSCs in people with non-H&N solid tumours, before CT and RT, and their relationship with co-occurring symptoms. METHODS: A prospective, observational study was conducted. Forty consecutive pre-treatment cancer patients, referred to radiation oncology outpatients over 6 weeks, were recruited. Data on TSCs, symptoms and nutritional status were obtained using the 'Taste and Smell Survey' and the 'abridged Patient-Generated Subjective Global Assessment' (abPG-SGA). BMI was measured. SPSS® was used for statistical analysis. Two-sided P values <0.05 were considered statistically significant. RESULTS: Most patients were newly diagnosed (n = 28; 70 %). Nineteen (48 %) reported TSCs; nine noted a stronger sweet and seven a stronger salt taste. Of these, four reported a stronger and four a weaker smell sensation. Those at nutritional risk reported more TSCs (n = 13/20). TSCs were significantly associated with dry mouth (P < 0.01), early satiety (P < 0.05) and fatigue (P < 0.05). CONCLUSIONS: TSCs preceded CT or RT in almost half of treatment-naive patients with solid tumours, notably stronger sweet and salt tastes. Half of the study group were at nutritional risk; the majority of these reported TSCs. TSCs were significantly associated with other symptoms. Future research and clinical guidelines, with a common terminology for assessment, diagnosis and management of cancer TSCs, are needed.