Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use

BACKGROUND: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. AIM: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. DESIGN: A systematic literature review and analysis of psychometric properties. DATA SOURCES: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed. RESULTS: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly. CONCLUSION: There is currently no 'ideal' outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field

Mitochondrial absorption of short wavelength light drives primate blue retinal cones into glycolysis which may increase their pace of aging

Photoreceptors have high energy demands and densely packed mitochondria through which light passes before phototransduction. Old world primates including humans have three cone photoreceptor types mediating color vision with short (S blue), medium (M green), and long (L red) wavelength sensitivities. However, S-cones are enigmatic. They comprise <10% of the total cone population, their responses saturate early, and they are susceptible in aging and disease. Here, we show that primate S-cones actually have few mitochondria and are fueled by glycolysis, not by mitochondrial respiration. Glycolysis has a limited ability to sustain activity, potentially explaining early S-cone saturation. Mitochondria act as optical filters showing reduced light transmission at 400–450 nm where S-cones are most sensitive (420 nm). This absorbance is likely to arise in a mitochondrial porphyrin that absorbs strongly in the Soret band. Hence, reducing mitochondria will improve S-cone sensitivity but result in increased glycolysis as an alternative energy source, potentially increasing diabetic vulnerability due to restricted glucose access. Further, glycolysis carries a price resulting in premature functional decline as seen in aged S-cones. Soret band absorption may also impact on mitochondrial rich M and L cones by reducing sensitivity at the lower end of their spectral sensitivity range resulting in increased differentiation from S-cone responses. These data add to the list of unique characteristic of S-cones and may also explain aspects of their vulnerability

Understanding the role of graphene on the moisture absorption in graphene/polymer nanocomposites

This study focuses on understanding the effect of graphene, when introduced in epoxy systems, on the overall moisture absorption capacity and behaviour of epoxy resin composites subjected to hydrothermal conditions. Pristine epoxy resin and epoxy resin incorporating functionalised and unfunctionalised graphene reinforcement were manufactured and exposed to 90°C purified water for 30 days. The flexural and tensile properties were observed for both unaged and aged specimens. A lower moisture absorption capacity was observed for graphene enhanced specimens as opposed to pristine epoxy resin, which suggests the potential of graphene as a barrier to moisture ingress. Despite the lower mass gain observed, the performance of the nano-filled resins exhibits a larger reduction in properties following water absorption

Substorm onset latitude and the steadiness of magnetospheric convection

We study the role of substorms and steady magnetospheric convection (SMC) in magnetic flux transport in the magnetosphere, using observations of field-aligned currents by the Active Magnetosphere and Planetary Electrodynamics Response Experiment. We identify two classes of substorm, with onsets above and below 65° magnetic latitude, which display different nightside field-aligned current morphologies. We show that the low-latitude onsets develop a poleward-expanding auroral bulge, and identify these as substorms that manifest ionospheric convection-braking in the auroral bulge region as suggested by Grocott et al. (2009, https://doi.org/10.5194/angeo-27-591-2009). We show that the high-latitude substorms, which do not experience braking, can evolve into SMC events if the interplanetary magnetic field remains southward for a prolonged period following onset. We conclude that during periods of ongoing driving, the magnetosphere displays repeated substorm activity or SMC depending on the rate of driving and the open magnetic flux content of the magnetosphere prior to onset. We speculate that sawtooth events are an extreme case of repeated onsets and that substorms triggered by northward-turnings of the interplanetary magnetic field mark the cessation of periods of SMC. Our results provide a new explanation for the differing modes of response of the terrestrial system to solar wind-magnetosphere-ionosphere coupling by invoking friction between the ionosphere and atmosphere

Education for sustainable development: A study in adolescent perception changes towards sustainability following a strategic planning-based intervention-the young persons' plan for the planet program

© 2019 by the authors. In 2016, the United Nations (UN) launched the 17 Sustainable Development Goals (SDGs) as a framework for sustainable development and a sustainable future. However, the global challenge has been to engage, connect, and empower communities, particularly young people, to both understand and deliver the 17 SDGs. In this study, we show the benefit of a strategic planning-based experiential learning tool, the Young Persons' Plan for the Planet (YPPP) Program, to improve the underlying competencies of Australian and Mauritian adolescents in increasing understanding and delivering the SDGs. The study was conducted with 300 middle to senior high school students, in 25 schools throughout Australia and Mauritius, over an 18-month period. The intervention included the development of research, strategic planning, management, STEM (Science Technology, Engineering, Maths) and global competency skills in the students, to enable them to build and deliver regional and national SDG plans. Research methods included pre- and post-intervention testing of the attitudes of these students to sustainable development outcomes and compared these attitudes to subsets of scientists and the Australian national population. Our results, from both qualitative and quantitative evidence, demonstrate significant improvements in these adolescents' appreciation of, and attitudes towards, the SDGs and sustainable outcomes, across a range of key parameters. The results from the 76 students who attended the International Conference in Mauritius in December 2018 demonstrate significant improvements in mean levels of understanding, and attitudes of the students towards the SDGs awareness (+85%), understanding/engagement (+75%), motivation (+57%), and action orientation/empowerment (+66%). These changes were tested across a range of socio-demographic, geographic, and cultural parameters, with consistent results. These findings have significant implications for the challenge of sustainable education and achieving community engagement and action towards the SDGs in Australia and Mauritius, particularly for young people. As the intervention can be replicated and scaled, the findings also highlight the opportunity to extend both the research and this type of experiential learning intervention across both broader geographies and other generation and community segments

Foot pain and foot health in an educated population of adults: results from the Glasgow Caledonian University Alumni Foot Health Survey

Abstract Background Foot pain is common amongst the general population and impacts negatively on physical function and quality of life. Associations between personal health characteristics, lifestyle/behaviour factors and foot pain have been studied; however, the role of wider determinants of health on foot pain have received relatively little attention. Objectives of this study are i) to describe foot pain and foot health characteristics in an educated population of adults; ii) to explore associations between moderate-to-severe foot pain and a variety of factors including gender, age, medical conditions/co-morbidity/multi-morbidity, key indicators of general health, foot pathologies, and social determinants of health; and iii) to evaluate associations between moderate-to-severe foot pain and foot function, foot health and health-related quality-of-life. Methods Between February and March 2018, Glasgow Caledonian University Alumni with a working email address were invited to participate in the cross-sectional electronic survey (anonymously) by email via the Glasgow Caledonian University Alumni Office. The survey was constructed using the REDCap secure web online survey application and sought information on presence/absence of moderate-to-severe foot pain, patient characteristics (age, body mass index, socioeconomic status, occupation class, comorbidities, and foot pathologies). Prevalence data were expressed as absolute frequencies and percentages. Multivariate logistic and linear regressions were undertaken to identify associations 1) between independent variables and moderate-to-severe foot pain, and 2) between moderate-to-severe foot pain and foot function, foot health and health-related quality of life. Results Of 50,228 invitations distributed, there were 7707 unique views and 593 valid completions (median age [inter-quartile range] 42 [31–52], 67.3% female) of the survey (7.7% response rate). The sample was comprised predominantly of white Scottish/British (89.4%) working age adults (95%), the majority of whom were overweight or obese (57.9%), and in either full-time or part-time employment (82.5%) as professionals (72.5%). Over two-thirds (68.5%) of the sample were classified in the highest 6 deciles (most affluent) of social deprivation. Moderate-to-severe foot pain affected 236/593 respondents (39.8%). High body mass index, presence of bunions, back pain, rheumatoid arthritis, hip pain and lower occupation class were included in the final multivariate model and all were significantly and independently associated with moderate-to-severe foot pain (p < 0.05), except for rheumatoid arthritis (p = 0.057). Moderate-to-severe foot pain was significantly and independently associated lower foot function, foot health and health-related quality of life scores following adjustment for age, gender and body mass index (p < 0.05). Conclusions Moderate-to-severe foot pain was highly prevalent in a university-educated population and was independently associated with female gender, high body mass index, bunions, back pain, hip pain and lower occupational class. Presence of moderate-to-severe foot pain was associated with worse scores for foot function, foot health and health-related quality-of-life. Education attainment does not appear to be protective against moderate-to-severe foot pain

Down-regulation of the caffeic acid \u3cem\u3eO\u3c/em\u3e-methyltransferase gene in switchgrass reveals a novel monolignol analog

Background Down-regulation of the caffeic acid 3-O-methyltransferase EC 2.1.1.68 (COMT) gene in the lignin biosynthetic pathway of switchgrass (Panicum virgatum) resulted in cell walls of transgenic plants releasing more constituent sugars after pretreatment by dilute acid and treatment with glycosyl hydrolases from an added enzyme preparation and from Clostridium thermocellum. Fermentation of both wild-type and transgenic switchgrass after milder hot water pretreatment with no water washing showed that only the transgenic switchgrass inhibited C. thermocellum. Gas chromatography–mass spectrometry (GCMS)-based metabolomics were undertaken on cell wall aqueous extracts to determine the nature of the microbial inhibitors. Results GCMS confirmed the increased concentration of a number of phenolic acids and aldehydes that are known inhibitors of microbial fermentation. Metabolomic analyses of the transgenic biomass additionally revealed the presence of a novel monolignol-like metabolite, identified as trans-3, 4-dimethoxy-5-hydroxycinnamyl alcohol (iso-sinapyl alcohol) in both non-pretreated, as well as hot water pretreated samples. iso-Sinapyl alcohol and its glucoside were subsequently generated by organic synthesis and the identity of natural and synthetic materials were confirmed by mass spectrometric and NMR analyses. The additional novel presence of iso-sinapic acid, iso-sinapyl aldehyde, and iso-syringin suggest the increased activity of a para-methyltransferase, concomitant with the reduced COMT activity, a strict meta-methyltransferase. Quantum chemical calculations were used to predict the most likely homodimeric lignans generated from dehydration reactions, but these products were not evident in plant samples. Conclusions Down-regulation of COMT activity in switchgrass resulted in the accumulation of previously undetected metabolites resembling sinapyl alcohol and its related metabolites, but that are derived from para-methylation of 5-hydroxyconiferyl alcohol, and related precursors and products; the accumulation of which suggests altered metabolism of 5-hydroxyconiferyl alcohol in switchgrass. Given that there was no indication that iso-sinapyl alcohol was integrated in cell walls, it is considered a monolignol analog. Diversion of substrates from sinapyl alcohol to free iso-sinapyl alcohol, its glucoside, and associated upstream lignin pathway changes, including increased phenolic aldehydes and acids, are together associated with more facile cell wall deconstruction, and to the observed inhibitory effect on microbial growth. However, iso-sinapyl alcohol and iso-sinapic acid, added separately to media, were not inhibitory to C. thermocellum cultures

Gene therapy with AR isoform 2 rescues spinal and bulbar muscular atrophy phenotype 2 by modulating AR transcriptional activity:AR isoform 2 counteracts polyglutamine AR toxicity

Spinal and bulbar muscular atrophy (SBMA) is an X-linked, adult-onset neuromuscular condition caused by an abnormal polyglutamine (polyQ) tract expansion in androgen receptor (AR) protein. SBMA is a disease with high unmet clinical need. Recent studies have shown that mutant AR-altered transcriptional activity is key to disease pathogenesis. Restoring the transcriptional dysregulation without affecting other AR critical functions holds great promise for the treatment of SBMA and other AR-related conditions; however, how this targeted approach can be achieved and translated into a clinical application remains to be understood. Here, we characterized the role of AR isoform 2, a naturally occurring variant encoding a truncated AR lacking the polyQ-harboring domain, as a regulatory switch of AR genomic functions in androgen-responsive tissues. Delivery of this isoform using a recombinant adeno-associated virus vector type 9 resulted in amelioration of the disease phenotype in SBMA mice by restoring polyQ AR-dysregulated transcriptional activity