The Gilles de la Tourette Syndrome-Quality of Life Scale for children and adolescents (C&A-GTS-QOL):development and validation of the Italian version

BACKGROUND: Gilles de la Tourette syndrome (GTS) is a chronic childhood-onset neuropsychiatric disorder with a significant impact on patients' health-related quality of life (HR-QOL). Cavanna et al. (Neurology 2008; 71: 1410-1416) developed and validated the first disease-specific HR-QOL assessment tool for adults with GTS (Gilles de la Tourette Syndrome-Quality of Life Scale, GTS-QOL). This paper presents the translation, adaptation and validation of the GTS-QOL for young Italian patients with GTS. METHODS: A three-stage process involving 75 patients with GTS recruited through three Departments of Child and Adolescent Neuropsychiatry in Italy led to the development of a 27-item instrument (Gilles de la Tourette Syndrome-Quality of Life Scale in children and adolescents, C&A-GTS-QOL) for the assessment of HR-QOL through a clinician-rated interview for 6-12 year-olds and a self-report questionnaire for 13-18 year-olds. RESULTS: The C&A-GTS-QOL demonstrated satisfactory scaling assumptions and acceptability. Internal consistency reliability was high (Cronbach's alpha > 0.7) and validity was supported by interscale correlations (range 0.4-0.7), principal-component factor analysis and correlations with other rating scales and clinical variables. CONCLUSIONS: The present version of the C&A-GTS-QOL is the first disease-specific HR-QOL tool for Italian young patients with GTS, satisfying criteria for acceptability, reliability and validity. © 2013 - IOS Press and the authors. All rights reserved.

Perception of risk, feelings of vulnerability and effects on driving behaviour in women drivers across the lifespan.

Sustained driving in older age has implications for quality of life and mental health. Studies have shown that despite the recognised importance of driving in maintaining health and social engagement, many women give up driving prematurely or adopt self-imposed restrictive driving practices. Emotional responses to driving have been implicated in these decisions. This research examined the effect of risk perception and feelings of vulnerability on women’s driving behaviour across the lifespan. It also developed and tested a modified theory of planned behaviour intervention to positively affect driving habits. The first two studies (N=395) used quantitative analysis to model driving behaviours affected by risk perception and feelings of vulnerability, and established that feelings of vulnerability do indeed affect women’s driving behaviour, specifically resulting in increases in driving avoidance and the adoption of maladaptive driving styles. Further, that self-regulation, conceptualised as avoidance, is used by drivers across the lifespan. Qualitative analysis of focus group data (N=48) in the third study provided a deeper understanding of the variations in coping behaviours adopted by sub-groups of drivers and extended the definition of self-regulation to incorporate adaptive coping strategies. The next study (N=64) reported the construction and preliminary validation of the novel self-regulation index (SRI) to measure wider self-regulation behaviours using an objective measure of driving behaviour, a simulated driving task. The understanding gained from the formative research was used in the final study, an extended theory of planned behaviour intervention to promote wider self-regulation behaviour, measured using the previously validated self-regulation index. The intervention achieved moderate success with changes in affective attitude and normative beliefs as well as self-reported behaviour. The results offer promise for self-regulation, incorporating a spectrum of planning and coping behaviours, to be used as a mechanism to assist drivers in achieving their personal mobility goals whilst promoting safe driving.

The measurement properties of the menorrhagia multi-attribute quality-of-life scale:a psychometric analysis

Menorrhagia, or heavy menstrual bleeding (HMB), is a common gynaecological condition. As the aim of treatment is to improve women's wellbeing and quality of life (QoL), it is necessary to have effective ways to measure this. This study investigated the reliability and validity of the menorrhagia multi-attribute scale (MMAS), a menorrhagia-specific QoL instrument. Participants (n = 431) completed the MMAS and a battery of other tests as part of the baseline assessment of the ECLIPSE (Effectiveness and Cost-effectiveness of Levonorgestrel-containing Intrauterine system in Primary care against Standard trEatment for menorrhagia) trial. Analyses of their responses suggest that the MMAS has good measurement properties and is therefore an appropriate condition-specific instrument to measure the outcome of treatment for HMB. © 2011 The Authors BJOG An International Journal of Obstetrics and Gynaecology © 2011 RCOG.

Decision support for lifecycle planning and risk management of small-scale biomass combined heat and power (bCHP) projects in the UK

Biomass is projected to account for approximately half of the new energy production required to achieve the 2020 primary energy target in the UK. Combined heat and power (CHP) bioenergy systems are not only a highly efficient method of energy conversion, at smaller-scales a significant proportion of the heat produced can be effectively utilised for hot water, space heating or industrial heating purposes. However, there are many barriers to project development and this has greatly inhibited deployment in the UK. Project viability is highly subjective to changes in policy, regulation, the finance market and the low cost incumbent; a high carbon centralised energy system. Unidentified or unmitigated barriers occurring during the project lifecycle may not only negatively impact on the project but could ultimately lead to project failure. The research develops a decision support system (DSS) for small-scale (500 kWe to 10 MWe) biomass combustion CHP project development and risk management in the early stages of a potential project’s lifecycle. By supporting developers in the early stages of project development with financial, scheduling and risk management analysis, the research aims to reduce the barriers identified and streamline decision-making. A fuzzy methodology is also applied throughout the developed DSS to support developers in handling the uncertain or approximate information often held at the early stages of the project lifecycle. The DSS is applied to a case study of a recently failed (2011) small-scale biomass CHP project to demonstrate its applicability and benefits. The application highlights that the proposed development within the case study was not viable. Moreover, further analysis of the possible barriers with the DSS confirmed that some possible modifications to be project could have improved this, such as a possible change of feedstock to a waste or residue, addressing the unnecessary land lease cost or by increasing heat utilisation onsite. This analysis is further supported by a practitioner evaluation survey that confirms the research contribution and objectives are achieved.

Changes in neural complexity during the perception of 3D images using random dot stereograms

One developing theme in consciousness research is that consciousness is not the product of any specific component of the brain, rather it is an emergent property of the changing patterns of connectivity between different specialised functional components. For example, the dynamic core hypothesis proposes that conscious experience requires high levels of neural complexity, where complexity is defined in terms of functional connectivity. To test this hypothesis, electroencephalography was recorded while participants were shown random dot-stereograms. Consistent with the dynamic core hypothesis, neural complexity increased as the participants changed from simply viewing the stereogram to consciously perceiving the hidden 3D image.

A barrier and techno-economic analysis of small-scale bCHP (biomass combined heat and power) schemes in the UK

bCHP (Biomass combined heat and power) systems are highly efficient at smaller-scales when a significant proportion of the heat produced can be effectively utilised for hot water, space heating or industrial heating purposes. However, there are many barriers to project development and this has greatly inhibited deployment in the UK. Project viability is highly subjective to changes in policy, regulation, the finance market and the low cost fossil fuel incumbent. The paper reviews the barriers to small-scale bCHP project development in the UK along with a case study of a failed 1.5MWel bCHP scheme. The paper offers possible explanations for the project's failure and suggests adaptations to improve the project resilience. Analysis of the project's: capital structuring contract length and bankability; feedstock type and price uncertainty, and plant oversizing highlight the negative impact of the existing project barriers on project development. The research paper concludes with a discussion on the effects of these barriers on the case study project and this industry more generally. A greater understanding of the techno-economic effects of some barriers for small-scale bCHP schemes is demonstrated within this paper, along with some methods for improving the attractiveness and resilience of projects of this kind. © 2014 Elsevier Ltd.

Local resources and procurement practices in humanitarian supply chains:an empirical examination of large-scale house reconstruction projects

Different procurement decisions taken by relief organizations can result in considerably different implications in regards to transport, storage, and distribution of humanitarian aid and ultimately can influence the performance of the humanitarian supply chain and the delivery of the humanitarian aid. In this article, we look into what resources are needed and how these resources evolve in the delivery of humanitarian aid. Drawing on the resource-based view of the firm, we develop a framework to categorize the impact of local resources on the configuration of humanitarian supply chains. In contrast to other papers, the importance of localizing the configuration of the humanitarian supply chain is not only conceptually recognized, but empirical investigations are also provided. In terms of methodology, this article is based on the analysis of secondary data from two housing reconstruction projects. Findings indicate that the use of local resources in humanitarian aid has positive effects on programs' overall supply chain performance and these effects are not only related to the macroeconomic perspective, but benefits expand to improvements related to the use of knowledge. At the same time, it was found that local sourcing often comes with a number of problems. For example, in one of the cases, significant problems existed, which were related to the scarcity of local supplies. Both housing reconstruction projects have indicated the continuous need for changes throughout the programs as a dynamic supply chain configuration is important for the long-term sustainability of reconstruction aid. © 2014 Decision Sciences Institute.

The influence of face and group orientation on the perception of luxury goods:a four market study of East Asian consumers

Purpose: The paper aims to further extend our understanding by assessing the extent to which two prominent cultural values in East Asia i.e. face saving and group orientation drive consumers' perceptions of luxury goods across four East Asian markets. Design/methodology/approach: A multi-methods research approach was adopted consisting of: an expert panel of close to 70 participants, group discussions with five extended East Asian families, personal interviews with eight East Asian scholars, a pilot test with over 50 East Asian graduate students and a multi-market survey of 443 consumer respondents in Beijing, Tokyo, Singapore and Hanoi. Findings: The authors extend previous conceptual studies by empirically investigating the impact of these two cultural values on the perception of luxury among East Asian societies. Specifically the study reveals that across all four markets face saving has the strongest influence on the conspicuous and hedonistic dimensions of luxury, group orientation meanwhile is the strongest predictor of the quality, extended self and exclusivity dimensions of luxury. Collectively these two cultural values significantly influence East Asian perceptions of luxury. Overall, the findings reiterate the importance of understanding different cultural values and their influence across different East Asian societies. Practical implications: The findings have important implications for managers of western luxury branded goods that are seeking to penetrate East Asian markets or seek to serve East Asian consumers. Specifically, to assist with developing suitable brand positioning, products, services, communications and pricing strategies. Originality/value: This study contributes to our understanding of the subject by exploring the impact of face saving and group orientation on the perception of luxury goods across four East Asian countries. Several directions for future research are suggested. © Emerald Group Publishing Limited.

Range of confidence scale and consumer knowledge calibration

The study examined the effect of range of a confidence scale on consumer knowledge calibration, specifically whether a restricted range scale (25%- 100%) leads to difference in calibration compared to a full range scale (0%-100%), for multiple-choice questions. A quasi-experimental study using student participants (N = 434) was employed. Data were collected from two samples; in the first sample (N = 167) a full range confidence scale was used, and in the second sample (N = 267) a restricted range scale was used. No differences were found between the two scales on knowledge calibration. Results from studies of knowledge calibration employing restricted range and full range confidence scales are thus comparable. © Psychological Reports 2014.

Evaluation efficiency of large-scale data set with negative data:an artificial neural network approach

Data envelopment analysis (DEA) is the most widely used methods for measuring the efficiency and productivity of decision-making units (DMUs). The need for huge computer resources in terms of memory and CPU time in DEA is inevitable for a large-scale data set, especially with negative measures. In recent years, wide ranges of studies have been conducted in the area of artificial neural network and DEA combined methods. In this study, a supervised feed-forward neural network is proposed to evaluate the efficiency and productivity of large-scale data sets with negative values in contrast to the corresponding DEA method. Results indicate that the proposed network has some computational advantages over the corresponding DEA models; therefore, it can be considered as a useful tool for measuring the efficiency of DMUs with (large-scale) negative data.

Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria:a cross sectional study

Background: Sickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life. Procedure: We conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire. Results: Adolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL. Conclusions: Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment. Pediatr Blood Cancer 2015;62:1245-1251.

Responsive fixture design using dynamic product inspection and monitoring technologies for the precision machining of large-scale aerospace parts

When machining a large-scale aerospace part, the part is normally located and clamped firmly until a set of features are machined. When the part is released, its size and shape may deform beyond the tolerance limits due to stress release. This paper presents the design of a new fixing method and flexible fixtures that would automatically respond to workpiece deformation during machining. Deformation is inspected and monitored on-line, and part location and orientation can be adjusted timely to ensure follow-up operations are carried out under low stress and with respect to the related datum defined in the design models.

Exploring how social workers experience and cope with public perception of their profession

The public’s perception of the social work profession is a rarely considered perspective, and yet a topic that is a concern to front Thepublic’sperceptionofthesocialworkprofessionisararelyconsideredperspective and yet a topic that is a concern to front line professionals. This paper explores how social workers experience and attempt to cope with public perception of their profession. It highlights the impact of these concerns on social workers’ personal experiences and professional practice. Using semi-structured interviews with sixteen UK social workers, from local authorities and private organisations,we explore the experiences of this group.Thematic analysis of the data identified four concerns: the experience of public perception, drivers of public perception, coping with public perception, and mechanisms to raise the professions profile. Examining public perception through the eyes of social workers provides valuable insights into the lived experiences of these professionals, and offers practical implications at both the micro and macro levels. It reveals two key ways in which the profession can begin to address the prevailing negative perception considered to be emanating from the public: through developing a more co-operative relationship with external sources of public perception (e.g. government and the media) and by engaging in more pro-active self-promotion of the service.

Perception of global image contrast is predicted by the same spatial integration model of gain control as detection and discrimination

How are the image statistics of global image contrast computed? We answered this by using a contrast-matching task for checkerboard configurations of ‘battenberg’ micro-patterns where the contrasts and spatial spreads of interdigitated pairs of micro-patterns were adjusted independently. Test stimuli were 20 × 20 arrays with various sized cluster widths, matched to standard patterns of uniform contrast. When one of the test patterns contained a pattern with much higher contrast than the other, that determined global pattern contrast, as in a max() operation. Crucially, however, the full matching functions had a curious intermediate region where low contrast additions for one pattern to intermediate contrasts of the other caused a paradoxical reduction in perceived global contrast. None of the following models predicted this: RMS, energy, linear sum, max, Legge and Foley. However, a gain control model incorporating wide-field integration and suppression of nonlinear contrast responses predicted the results with no free parameters. This model was derived from experiments on summation of contrast at threshold, and masking and summation effects in dipper functions. Those experiments were also inconsistent with the failed models above. Thus, we conclude that our contrast gain control model (Meese & Summers, 2007) describes a fundamental operation in human contrast vision.

Validation of the English version of the Scale for Psychosocial Factors in Food Allergy and the relationship with mental health, quality of life, and self-efficacy

Background. The Scale for Psychosocial Factors in Food Allergy (SPS-FA) is based on the biopsychosocial model of health and was developed and validated in Chile to measure the interaction between psychological variables and allergy symptoms in the child. We sought to validate this scale in an English speaking population and explore its relationship with parental quality of life, self-efficacy, and mental health. Methods. Parents (n = 434) from the general population in the UK, who had a child with a clinical diagnosis of food allergy, completed the SPS-FA and validated scales on food allergy specific parental quality of life (QoL), parental self-efficacy, and general mental health. Findings. The SPS-FA had good internal consistency (alphas = .61-.86). Higher scores on the SPS-FA significantly correlated with poorer parental QoL, self-efficacy, and mental health. All predictors explained 57% of the variance in SPS-FA scores with QoL as the biggest predictor (β = .52). Discussion. The SPS-FA is a valid scale for use in the UK and provides a holistic view of the impact of food allergy on the family. In conjunction with health-related QoL measures, it can be used by health care practitioners to target care for patients and evaluate psychological interventions for improvement of food allergy management.