Health-related quality of life in portuguese SLE patients: an outcome measure independent of disease activity and cumulative damage

PURPOSE: To evaluate quality of life in Portuguese patients with Systemic Lupus Erithematosus (SLE) and its correlation with disease activity and cumulative damage. METHODS: We included consecutive SLE patients, fulfilling the 1997 ACR Classification Criteria for SLE and followed at the Rheumatology Department of the University Hospital of Coimbra, Portugal at time of visit to the outpatient clinic. Quality of life was evaluated using the patient self-assessment questionnaire Medical Outcomes Survey Short Form-36 (SF-36) (validated Portuguese version). The consulting rheumatologist fulfilled the SLE associated indexes for cumulative damage (Systemic Lupus International Collaborating Clinics- Damage Index: SLICC/ACR-DI) and disease activity (Systemic Lupus Erythematosus Disease Activity Index: SLEDAI 2000). Correlation between SLEDAI and SLICC and SF-36 was tested with the Spearman Coefficient. Significant level considered was 0.05. RESULTS: The study included 133 SLE patients (90.2% female, mean age - 40.7 years, mean disease duration - 8.7 years). Most patients presented low disease activity (mean SLEDAI = 4.23) and limited cumulative damage (mean SLICC = 0.76). Despite that, SF-36 mean scores were below 70% in all eight domains of the index. Physical function domains showed lower scores than mental function domains. The QoL in this group of patients is significantly impaired when compared with the reference Portuguese population (p<0.05 in all domains). There was no correlation between clinical activity or cumulative damage and quality of life. CONCLUSION: QoL is significantly compromised in this group of SLE patients, but not related with disease activity or damage. These findings suggest that disease activity, cumulative damage and QoL are independent outcome measures and should all be used to assess the full impact of disease in SLE patients.

Understanding and validating accelerometry as a measure of physical activity in children with intellectual disabilities

Background Physical activity in children with intellectual disabilities is a neglected area of study, which is most apparent in relation to physical activity measurement research. Although objective measures, specifically accelerometers, are widely used in research involving children with intellectual disabilities, existing research is based on measurement methods and data interpretation techniques generalised from typically developing children. However, due to physiological and biomechanical differences between these populations, questions have been raised in the existing literature on the validity of generalising data interpretation techniques from typically developing children to children with intellectual disabilities. Therefore, there is a need to conduct population-specific measurement research for children with intellectual disabilities and develop valid methods to interpret accelerometer data, which will increase our understanding of physical activity in this population. Methods Study 1: A systematic review was initially conducted to increase the knowledge base on how accelerometers were used within existing physical activity research involving children with intellectual disabilities and to identify important areas for future research. A systematic search strategy was used to identify relevant articles which used accelerometry-based monitors to quantify activity levels in ambulatory children with intellectual disabilities. Based on best practice guidelines, a novel form was developed to extract data based on 17 research components of accelerometer use. Accelerometer use in relation to best practice guidelines was calculated using percentage scores on a study-by-study and component-by-component basis. Study 2: To investigate the effect of data interpretation methods on the estimation of physical activity intensity in children with intellectual disabilities, a secondary data analysis was conducted. Nine existing sets of child-specific ActiGraph intensity cut points were applied to accelerometer data collected from 10 children with intellectual disabilities during an activity session. Four one-way repeated measures ANOVAs were used to examine differences in estimated time spent in sedentary, moderate, vigorous, and moderate to vigorous intensity activity. Post-hoc pairwise comparisons with Bonferroni adjustments were additionally used to identify where significant differences occurred. Study 3: The feasibility on a laboratory-based calibration protocol developed for typically developing children was investigated in children with intellectual disabilities. Specifically, the feasibility of activities, measurements, and recruitment was investigated. Five children with intellectual disabilities and five typically developing children participated in 14 treadmill-based and free-living activities. In addition, resting energy expenditure was measured and a treadmill-based graded exercise test was used to assess cardiorespiratory fitness. Breath-by-breath respiratory gas exchange and accelerometry were continually measured during all activities. Feasibility was assessed using observations, activity completion rates, and respiratory data. Study 4: Thirty-six children with intellectual disabilities participated in a semi-structured school-based physical activity session to calibrate accelerometry for the estimation of physical activity intensity. Participants wore a hip-mounted ActiGraph wGT3X+ accelerometer, with direct observation (SOFIT) used as the criterion measure. Receiver operating characteristic curve analyses were conducted to determine the optimal accelerometer cut points for sedentary, moderate, and vigorous intensity physical activity. Study 5: To cross-validate the calibrated cut points and compare classification accuracy with existing cut points developed in typically developing children, a sub-sample of 14 children with intellectual disabilities who participated in the school-based sessions, as described in Study 4, were included in this study. To examine the validity, classification agreement was investigated between the criterion measure of SOFIT and each set of cut points using sensitivity, specificity, total agreement, and Cohen’s kappa scores. Results Study 1: Ten full text articles were included in this review. The percentage of review criteria met ranged from 12%−47%. Various methods of accelerometer use were reported, with most use decisions not based on population-specific research. A lack of measurement research, specifically the calibration/validation of accelerometers for children with intellectual disabilities, is limiting the ability of researchers to make appropriate and valid accelerometer use decisions. Study 2: The choice of cut points had significant and clinically meaningful effects on the estimation of physical activity intensity and sedentary behaviour. For the 71-minute session, estimations for time spent in each intensity between cut points ranged from: sedentary = 9.50 (± 4.97) to 31.90 (± 6.77) minutes; moderate = 8.10 (± 4.07) to 40.40 (± 5.74) minutes; vigorous = 0.00 (± .00) to 17.40 (± 6.54) minutes; and moderate to vigorous = 8.80 (± 4.64) to 46.50 (± 6.02) minutes. Study 3: All typically developing participants and one participant with intellectual disabilities completed the protocol. No participant met the maximal criteria for the graded exercise test or attained a steady state during the resting measurements. Limitations were identified with the usability of respiratory gas exchange equipment and the validity of measurements. The school-based recruitment strategy was not effective, with a participation rate of 6%. Therefore, a laboratory-based calibration protocol was not feasible for children with intellectual disabilities. Study 4: The optimal vertical axis cut points (cpm) were ≤ 507 (sedentary), 1008−2300 (moderate), and ≥ 2301 (vigorous). Sensitivity scores ranged from 81−88%, specificity 81−85%, and AUC .87−.94. The optimal vector magnitude cut points (cpm) were ≤ 1863 (sedentary), ≥ 2610 (moderate) and ≥ 4215 (vigorous). Sensitivity scores ranged from 80−86%, specificity 77−82%, and AUC .86−.92. Therefore, the vertical axis cut points provide a higher level of accuracy in comparison to the vector magnitude cut points. Study 5: Substantial to excellent classification agreement was found for the calibrated cut points. The calibrated sedentary cut point (ĸ =.66) provided comparable classification agreement with existing cut points (ĸ =.55−.67). However, the existing moderate and vigorous cut points demonstrated low sensitivity (0.33−33.33% and 1.33−53.00%, respectively) and disproportionately high specificity (75.44−.98.12% and 94.61−100.00%, respectively), indicating that cut points developed in typically developing children are too high to accurately classify physical activity intensity in children with intellectual disabilities. Conclusions The studies reported in this thesis are the first to calibrate and validate accelerometry for the estimation of physical activity intensity in children with intellectual disabilities. In comparison with typically developing children, children with intellectual disabilities require lower cut points for the classification of moderate and vigorous intensity activity. Therefore, generalising existing cut points to children with intellectual disabilities will underestimate physical activity and introduce systematic measurement error, which could be a contributing factor to the low levels of physical activity reported for children with intellectual disabilities in previous research.

SEEKING CULTURAL FAIRNESS IN A MEASURE OF RELATIONAL REASONING

Relational reasoning, or the ability to identify meaningful patterns within any stream of information, is a fundamental cognitive ability associated with academic success across a variety of domains of learning and levels of schooling. However, the measurement of this construct has been historically problematic. For example, while the construct is typically described as multidimensional—including the identification of multiple types of higher-order patterns—it is most often measured in terms of a single type of pattern: analogy. For that reason, the Test of Relational Reasoning (TORR) was conceived and developed to include three other types of patterns that appear to be meaningful in the educational context: anomaly, antinomy, and antithesis. Moreover, as a way to focus on fluid relational reasoning ability, the TORR was developed to include, except for the directions, entirely visuo-spatial stimuli, which were designed to be as novel as possible for the participant. By focusing on fluid intellectual processing, the TORR was also developed to be fairly administered to undergraduate students—regardless of the particular gender, language, and ethnic groups they belong to. However, although some psychometric investigations of the TORR have been conducted, its actual fairness across those demographic groups has yet to be empirically demonstrated. Therefore, a systematic investigation of differential-item-functioning (DIF) across demographic groups on TORR items was conducted. A large (N = 1,379) sample, representative of the University of Maryland on key demographic variables, was collected, and the resulting data was analyzed using a multi-group, multidimensional item-response theory model comparison procedure. Using this procedure, no significant DIF was found on any of the TORR items across any of the demographic groups of interest. This null finding is interpreted as evidence of the cultural-fairness of the TORR, and potential test-development choices that may have contributed to that cultural-fairness are discussed. For example, the choice to make the TORR an untimed measure, to use novel stimuli, and to avoid stereotype threat in test administration, may have contributed to its cultural-fairness. Future steps for psychometric research on the TORR, and substantive research utilizing the TORR, are also presented and discussed.

Locus of Control revisited: development of a new bi-dimensional measure

Locus of control (LOC) has a long tradition in Psychology, and various instruments have been designed for its measurement. However, the dimensionality of the construct is unclear, and still gives rise to considerable controversy. The aim of the present work is to present new evidence of validity in relation to the dimensionality of LOC. To this end, we developed a new measurement instrument with 23 items. The sample was made up of 697 Spanish participants, of whom 57.5% were women (M=22.43; SD= 9.19). The results support the bi-dimensionality of LOC: internal (α=.87) and external (α=.85). Furthermore, both subscales have shown adequate validity evidence in relation to self-efficacy, achievement motivation and optimism (r xy> .21). Statistically significant differences were found by sex (p < .05): men scored higher in external LOC and women in internal LOC. The validity evidence supports a two-dimensional structure for the LOC, and the measurement instrument developed showed adequate psychometric properties.

Linear non-local diffusion problems in metric measure spaces

The aim of this paper is to provide a comprehensive study of some linear non-local diffusion problems in metric measure spaces. These include, for example, open subsets in ℝN, graphs, manifolds, multi-structures and some fractal sets. For this, we study regularity, compactness, positivity and the spectrum of the stationary non-local operator. We then study the solutions of linear evolution non-local diffusion problems, with emphasis on similarities and differences with the standard heat equation in smooth domains. In particular, we prove weak and strong maximum principles and describe the asymptotic behaviour using spectral methods.

Microcantilever arrays functionalised with spiropyran photoactive moieties as systems to measure photo-induced surface stress changes

[EN] Herein we investigate the feasibility of detecting photo-induced surface stress changes using the deflection response of cantilevers. For this purpose, silicon microcantilevers have been functionalised with spiropyran photochromic molecules, using both a monolayer and a polymeric brushes approach. Uponultraviolet light irradiation, the spiropyran unit is converted to the merocyanine form due to the photo-induced cleavage of the Cspiro-O bond. The two forms of the molecule have dramatically different charge,polarity and molecular conformations. This makes spiropyrans an ideal system to study the correlation between photo-induced molecular changes and corresponding changes in surface stress. Our investigations include monitoring the changes in static cantilever deflection, and consequently, surface stress of the spiropyran functionalised cantilevers on exposure to ultraviolet light. Cantilever deflection data reveals that ultraviolet induced conformational changes in the spiropyran moiety cause a change incompressive surface stress and this varies with the type of functionalisation method implemented. The change in surface stress response from the spiropyran polymer brushes functionalised cantilevers gives an average surface stress change of 98 Nm−1(n = 24) while the spiropyran monolayer coated cantilevers have an average surface stress change of about 446 Nm−1(n = 8) upon irradiation with UV light.

Transcultural adaptation and validation of the Celiac Dietary Adherence Test: a simple questionnaire to measure adherence to a gluten-free diet

Background and aims: A gluten-free diet is to date the only treatment available to celiac disease sufferers. However, systematic reviews indicate that, depending on the method of evaluation used, only 42% to 91% of patients adhere to the diet strictly. Transculturally adapted tools that evaluate adherence beyond simple self-informed questions or invasive analyses are, therefore, of importance. The aim is to obtain a Spanish transcultural adaption and validation of Leffler's Celiac Dietary Adherence Test. Methods: A two-stage observational transversal study: translation and back translation by four qualified translators followed by a validation stage in which the questionnaire was administered to 306 celiac disease patients aged between 12 and 72 years and resident in Aragon. Factorial structure, criteria validity and internal consistency were evaluated. Results: The Spanish version maintained the 7 items in a 3-factor structure. Feasibility was very high in all the questions answered and the floor and ceiling effects were very low (4.3% and 1%, respectively). The Spearman correlation with the self-efficacy and life quality scales and the self-informed question were statistically significant (p < 0.01). According to the questionnaire criteria, adherence was 72.3%. Conclusion: The Spanish version of the Celiac Dietary Adherence Test shows appropriate psychometric properties and is, therefore, suitable for studying adherence to a gluten-free diet in clinical and research environments.

Innovation dynamics in rural areas: contributions to capture and measure innovation, valuing territorial specificities

Doutoramento em Gestão Interdisciplinar da Paisagem - Instituto Superior de Agronomia / Universidade dos Açores / Universidade de Évora

Superpixel-based roughness measure for multispectral satellite image segmentation

The new generation of artificial satellites is providing a huge amount of Earth observation images whose exploitation can report invaluable benefits, both economical and environmental. However, only a small fraction of this data volume has been analyzed, mainly due to the large human resources needed for that task. In this sense, the development of unsupervised methodologies for the analysis of these images is a priority. In this work, a new unsupervised segmentation algorithm for satellite images is proposed. This algorithm is based on the rough-set theory, and it is inspired by a previous segmentation algorithm defined in the RGB color domain. The main contributions of the new algorithm are: (i) extending the original algorithm to four spectral bands; (ii) the concept of the superpixel is used in order to define the neighborhood similarity of a pixel adapted to the local characteristics of each image; (iii) and two new region merged strategies are proposed and evaluated in order to establish the final number of regions in the segmented image. The experimental results show that the proposed approach improves the results provided by the original method when both are applied to satellite images with different spectral and spatial resolutions.

Why can't I measure the external quantum efficiency of the Ge subcell of my multijunction solar cell?

The measurement of the external quantum efficiency (EQE) of low bandgap subcells in a multijunction solar cell can be sometimes problematic. In particular, this paper describes a set of cases where the EQE of a Ge subcell in a conventional GaInP/GaInAs/Ge triple-junction solar cell cannot be fully measured. We describe the way to identify each case by tracing the I-V curve under the same light-bias conditions applied for the EQE measurement, together with the strategies that could be implemented to attain the best possible measurement of the EQE of the Ge subcell.

A microelectrode impedance method to measure interaction of cells

An impedance method was developed to determine how immune system cells (hemocyte) interact with intruder cells (parasites). When the hemocyte cells interact with the parasites, they cause a defensive reaction and the parasites start to aggregate in clusters. The level of aggregation is a measure of the host-parasite interaction, and provides information about the efficiency of the immune system response. The cell aggregation is monitored using a set of microelectrodes. The impedance spectrum is measured between each individual microelectrode and a large reference electrode. As the cells starts to aggregate and settle down towards the microelectrode array the impedance of the system is changed. It is shown that the system impedance is very sensitive to the level of cell aggregation and can be used to monitor in real time the interaction between hemocyte cells and parasites.

La gouvernance métropolitaine du transport collectif dans la région montréalaise : le cas du SRB Pie-IX

Montréal parle de disposer d’un service rapide par bus depuis une dizaine années. En 2015, les travaux pour réaliser le premier tronçon du projet appelé le SRB Pie-IX commencent à peine. Comment justifier des délais de réalisation de plusieurs années alors que d’autres villes y arrivent en moins de 3 ans? Plusieurs élus et organismes de Montréal dénoncent une problématique de gouvernance du transport collectif. Seulement, il n’est pas évident de saisir la signification de ce concept si souvent invoqué pour justifier, entre autres, les difficultés de la métropole à faire naître des projets métropolitains de transport collectif. Certains évoquent la responsabilité du gouvernement, d’autres avancent la mauvaise répartition des rôles et responsabilités ou encore déplorent le trop grand nombre d’intervenants dans la région métropolitaine. La gouvernance est un concept à la fois flou et complexe qui cherche à établir la bonne conduite des affaires publiques comme celle de la gestion métropolitaine du transport collectif. Cependant, le système de transport collectif fait intervenir une multitude de parties prenantes aux intérêts contradictoires. La « bonne gouvernance » serait d’établir une collaboration fructueuse qui dépasse les limites institutionnalisées des intervenants pour réaliser des projets d’envergure métropolitaine, comme le SRB Pie-IX.

A measure of skin familiarity and its role in the early detection of skin cancer

Skin self-examination (SSE) is promoted widely so that individuals will become familiar with their skin and be better able to identify suspicious changes earlier. However, individuals can also become familiar with their skin other than through purposeful SSE. In this article, we develop a measure of skin familiarity based on the density of spots on 14 different areas of the body. A factor analysis of the 14 body-area scores revealed that they could be grouped into four broad body regions (shoulders and back, front of legs, back of legs, and feet). Each total body score and body-region score has high internal consistency (Cronbach's alpha coefficients ranging from 0.79 to 0.93). Moreover, the scores correlate as expected with skin self-examination behaviors and other personal characteristics, indicating high construct validity. We consider the advantages that skin familiarity measures offer over the exclusive use of SSE measures in the assessment of early detection activities and discuss the direction of future research in this area