The problem with health measurement

In this review we discuss health measurement with a focus on psychometric methods and methodology. In particular, we examine some of the key issues currently facing the use of clinician and patient rating scales to measure the health outcomes of disease and treatment. We present three key facts and flag one crucial problem. First, the numbers generated by scales are increasingly used as the measurements of the central dependent variables upon which clinical decisions are frequently made. The rising profile of rating scales has significant implications for scale construction, evaluation, and selection, as well as for interpreting studies. Second, rating scale science is well established. Therefore, it is important to learn the lessons from those who have built and established the science over the last century. Finally, the goal of a rating scale is to measure. As such, over the last half century, developments in rating scale (psychometric) methods have caused a refocus in the way we should be measuring health. In particular, newer methods have significant clinical advantages over traditional approaches. These should be seriously considered for inclusion in everyday practice. This leads us to the central problem with health measurement, which is that we cannot currently be sure what most rating scales are measuring. This is because the methods we have in place to ensure the validity of rating scales fall short of what is actually required. We expand on this point, and provide some potential routes forward to help address this important problem

Polymeric Frameworks as Organic Semiconductors with Controlled Electronic Properties

The rational assembly of monomers, in principle, enables the design of a specific periodicity of polymeric frameworks, leading to a tailored set of electronic structure properties in these solid-state materials. The further development of these emerging systems requires a combination of both experimental and theoretical studies. Here, we investigated the electronic structures of two-dimensional polymeric frameworks based on triazine and benzene rings, by means of electrochemical techniques. The experimental density of states was obtained from quasi-open-circuit voltage measurements through galvanostatic intermittent titration technique, which we show to be in excellent agreement with first principles calculations performed for two and three-dimensional structures of these polymeric frameworks. These findings suggest that the electronic properties do not only depend on the number of stacked layers but also on the ratio of the different aromatic rings

A new Phoenix from the ashes?

The parish of Cernache do Bonjardim, according to CAOP20111 , is a small parish in the interior of Portugal, whose history dates back to the Late Bronze Age (about 700 BC)2 . In 1525, a reference was made to Cernache on a descriptive map that appears in the Codex of Hamburg. The late nineteenth and early twentieth centuries were a time of cultural activity and exceptional dynamism, creating an almost cosmopolitan atmosphere in Cernache do Bonjardim, which is extraordinary, considering the Portuguese conjuncture in those times and the fact that Cernache, then just a village, is located in the center of the country. After this golden age, due to various negative pressures, it gradually declined, until the current stagnation. The orography of the study area consists of hills, with steep slopes, and agricultural areas, mostly located on plateaus, with small pieces of land and small owners. Cernache currently has 3,000 inhabitants (Census 2011) distributed in a territory with around 7,200 hectares. Desertification and the aging of the population are two of the great problems, being signs of its interiorityinfo:eu-repo/semantics/publishedVersio

A glimpse at impacts and resilience in the Parish of Cernache do Bonjardim, Portugal

The object of study here is the parish of Cernache do Bonjardim in central Portugal and in accordance with the territorial boundaries in effect until 2013. The motivation for producing this article is that the results of the 2021 census are due for publication and may enable the building of relationships between these data and the resilience of the community in this parish. Based on the resilience of rural communities' concept, and through analysis of statistical data, we aim to understand how the variations in population and accommodation influence the different parameters of community resilience. The relevance of this work derives from its object of study and the actuality of the data. The starting data are those provided by the national institutions for the last three censuses. As there were administrative changes and impacts on the community in the last decade, there was the need to process the data to be able to analyse the studied parish in isolation. The findings demonstrate how the negative trends have continued over the last two decades, exacerbating the problems of desertification and population ageing. Therefore, the problems affecting the resilience of this community have also remained the same. As expected, the community of the parish studied proved to be resilient, despite all the setbacks and impacts suffered, as reflected in the various works developed both on this topic and on this community.R+D+i projects of the PAIDI 2020, PYC20 RE 029 IAPHinfo:eu-repo/semantics/publishedVersio

Characterization and territorial distribution of religious heritage in the parish of Cernache do Bonjardim, Central Portugal

Since Portugal is a mainly Catholic country, there are several testimonies of the practice of this religion and the faith of the people. In the parish of Cernache do Bonjardim, Central Portugal, birthplace of Sao Nuno de Santa Maria (canonized on April 26, 2009), there are several types of buildings related to religion, such as churches, chapels, field crosses and built sets. The number of churches and chapels is impressive: 18 religious buildings exist in a territory with about 7000 Ha and 3000 inhabitants (Census 2011). These buildings dated from different periods, have different characteristics and, within the same category, interesting differences can also be found. The main objectives of this article are to characterize and analyse the current situation of this heritage and its dissemination, enhancement and subsequent protection. The methods used were based on bibliographic, iconographic, photographic, cartographic, webgraphic research, in situ surveys and interaction with local residents. The approach comprises the survey of the religious heritage mentioned above, subsequent cataloguing and analysis regarding the orientation chosen for its construction, its age and its geographic distribution. With this analysis it is possible to group the elements into categories that facilitate their characterization. One of the main limitations of the investigation was the lack of documents and registrations about the described elements, which is partly due to the fire of 1917, in the City Hall, which destroyed all existing documents, and partly due to the disappearance of some of those elements and the subsequent reuse and relocation of the materials that made them up, making it difficult to recognize them, as well as the geographical and temporal location of their construction. The main conclusions are that most of the churches and chapels, against all expectations, do not respect the traditional canonical orientation and, that the majority of them was built in the 20th century and (probably) in the 17th century. Although distributed uniformly throughout the territory of the parish, the religious heritage is mostly found in the village of Cernache do Bonjardim and in the area of Serra da Santa, the highest point in this territory (475 m). This work does not intend to influence even more the attitudes of the population because they already value, appreciate and care for this heritage. However, the point of view presented in this article is different from the usual one and may open a new way of looking at this heritage. The originality of this work is that this type of heritage has not yet been approached in the territory under study. The article contributes to another study about this parish. As future developments, an analysis of the relationship between the dominant terrain orientations and the location of these patrimonial elements is suggested in order to be able to estimate more relationships that may exist.info:eu-repo/semantics/publishedVersio

Una aproximación a los impactos y la resiliencia en la feligresía de Cernache do Bonjardim, Portugal

L'objecte d'estudi d'aquest treball és la feligresia de Cernache do Bonjardim, situada en el centre de Portugal i segons els límits territorials definits fins a 2013. La motivació per a la realització d'aquest article es deu al fet que els resultats dels censos de 2021 estan començant a sortir i és possible construir relacions entre aquestes dades i la resiliència de la comunitat d'aquesta feligresia. Partint del concepte de resiliència de les comunitats rurals, i a través de l'anàlisi de les dades estadístiques, es pretén comprendre com influeix la variació de població i allotjament en els diferents paràmetres de la resiliència comunitària. La novetat d'aquest treball és l'objecte d'estudi i l'actualitat de les dades obtingudes. Les dades de partida són els proporcionats per les institucions nacionals per als últims tres censos. Com va haver-hi canvis administratius i la comunitat va sofrir impactes en l'última dècada, va haver-hi la necessitat de treballar les dades per a poder-se analitzar la feligresia estudiada presa aïlladament. Aquest treball mostra que les tendències han continuat durant les últimes dues dècades, la qual cosa ha exacerbat el problema de la desertificació i l'envelliment de la població. Per tant, els problemes que afecten la resiliència d'aquesta comunitat també s'han mantingut. Com era d'esperar, la comunitat de la feligresia estudiada va demostrar ser resilient, malgrat tots els contratemps i impactes que va sofrir, com ho demostren els diversos treballs que s'han desenvolupat sobre aquest tema i sobre aquesta comunitat.The object of study here is the parish of Cernache do Bonjardim in central Portugal and in accordance with the territorial boundaries in effect until 2013. The motivation for producing this article is that the results of the 2021 census are due for publication and may enable the building of relationships between these data and the resilience of the community in this parish. Based on the resilience of rural communities’ concept, and through analysis of statistical data, we aim to understand how the variations in population and accommodation influence the different parameters of community resilience. The relevance of this work derives from its object of study and the actuality of the data. The starting data are those provided by the national institutions for the last three censuses. As there were administrative changes and impacts on the community in the last decade, there was the need to process the data to be able to analyse the studied parish in isolation. The findings demonstrate how the negative trends have continued over the last two decades, exacerbating the problems of desertification and population ageing. Therefore, the problems affecting the resilience of this community have also remained the same. As expected, the community of the parish studied proved to be resilient, despite all the setbacks and impacts suffered, as reflected in the various works developed both on this topic and on this community.El objeto de estudio de este trabajo es la feligresía de Cernache do Bonjardim, ubicada en el centro de Portugal y según los límites territoriales definidos hasta 2013. La motivación para la realización de este artículo se debe a que los resultados de los censos de 2021 están comenzando a salir y es posible construir relaciones entre estos datos y la resiliencia de la comunidad de esta feligresía. Partiendo del concepto de resiliencia de las comunidades rurales, y a través del análisis de los datos estadísticos, se pretende comprender cómo influye la variación de población y alojamiento en los diferentes parámetros de la resiliencia comunitaria. La novedad de este trabajo es el objeto de estudio y la actualidad de los datos obtenidos. Los datos de partida son los proporcionados por las instituciones nacionales para los últimos tres censos. Como hubo cambios administrativos y la comunidad sufrió impactos en la última década, hubo la necesidad de trabajar los datos para poderse analizar la feligresía estudiada tomada aisladamente. Este trabajo muestra que las tendencias han continuado durante las últimas dos décadas, lo que ha exacerbado el problema de la desertificación y el envejecimiento de la población. Por lo tanto, los problemas que afectan la resiliencia de esta comunidad también se han mantenido. Como era de esperar, la comunidad de la feligresía estudiada demostró ser resiliente, a pesar de todos los contratiempos e impactos que sufrió, como lo demuestran los diversos trabajos que se han desarrollado sobre este tema y sobre esta comunidad.Peer Reviewe

A pragmatic patient-reported outcome strategy for rare disease clinical trials: application of the EORTC item library to myelodysplastic syndromes, chronic myelomonocytic leukemia, and acute myeloid leukemia.

BackgroundNovel, pragmatic, patient-centered strategies are needed to ensure fit-for-purpose patient-reported outcomes (PRO) instruments in clinical trial research for rare diseases such as myelodysplastic syndromes (MDS), acute myeloid leukemia (AML), and chronic myelomonocytic leukemia (CMML). The objective of the current study was to select supplemental items to add to the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life-Core 30 (QLQ-C30) to ensure content coverage of all important clinical concepts in patients with higher-risk (HR) MDS, low-blast count (LB) AML, and CMML, thus, improving the instrument's ability to detect clinically meaningful treatment benefit for this context of use.MethodsOur mixed methods approach comprised literature review, clinician consultation (n = 3), and qualitative and quantitative analysis of two stages of patient interview data (n = 14, n = 18) to select library bank items to supplement a generic cancer PRO, the EORTC QLQ-C30.ResultsUnique symptom (n = 54) and impact (n = 72) concepts were organized into conceptual frameworks of treatment benefit, compared with EORTC QLQ-C30 items and conceptual gaps identified. Supplemental items (n = 13) addressing those gaps were selected from the EORTC Item Library and tested with patients. Supplemental item endorsement frequencies met World Health Organization Quality of Life criteria, suggesting good targeting and relevance for this sample. However, three supplemental items were confirmed as problematic based upon cognitive debriefing results, and expert clinical consultations. Ultimately, 10 supplemental items (n = 7 symptom; n = 3 impact) were selected for the MDS/AML/CMML context.ConclusionSupplemental items were selected to enhance the conceptual coverage of the EORTC QLQ-C30 in the areas of fatigue, shortness of breath, and functioning

Territory and drystone walls. Comparative of case studies in central and southern Portugal

Since becoming settled, Man had the need to shape the territory in his benefit, gaining ground for agricultural activity. Drystone walls were the way found to overcome sharp slopes. The way these walls are arranged in the territory is not random, as it may seem at first glance: they are disposed in the best way to facilitate the agricultural activity, taking into account the natural factors of the territory where they are located, such as orography, climate or geology. Taking as study cases two regions in Portugal under slightly different climate regimes, one located in the Algarvian Barrocal and the other located in the Center, we intend to compare and advance with explanations as to the way drystone walls are disposed and their relation to the territory. To achieve the objectives bibliographical and photographic studies, as well as interviews with the inhabitants of these areas, and cartographic and field surveys were carried out. Whereas the purpose, materials and construction characteristics were achieved by the previous, their disposition and relationship with the orography were carried out by the latest. Particularly, field surveys were made by digital stereophotogrammetry applied to several overlapping nadiral photographic images from different perspectives acquired by an unmanned aerial vehicle along its flying pathways that allowed for very high-resolution geographic data. Where such surveys were not made, cartographic data were used instead. Through the dissemination of such vernacular heritage, it becomes valued and known. In this way, people will attribute cultural and patrimonial value, protecting it, especially the local population that tends not to attribute any value to this “minor” heritage, contributing to its disappearance. There are still not much works about this subject in the areas analyzed here, so this paper has an added value, in order to disseminate and create added value to these kind of heritage.info:eu-repo/semantics/publishedVersio

Fragile Complexity of Adaptive Algorithms

The fragile complexity of a comparison-based algorithm is f(n) if each input element participates in O(f(n)) comparisons. In this paper, we explore the fragile complexity of algorithms adaptive to various restrictions on the input, i.e. algorithms with a fragile complexity parameterized by a quantity other than the input size n. We show that searching for the predecessor in a sorted array has fragile complexity Θ(log k), where k is the rank of the query element, both in a randomized and a deterministic setting. For predecessor searches, we also show how to optimally reduce the amortized fragile complexity of the elements in the array. We also prove the following results: Selecting the kth smallest element has expected fragile complexity O(log log k) for the element selected. Deterministically finding the minimum element has fragile complexity Θ(log (Inv ) ) and Θ(log (Runs ) ), where Inv is the number of inversions in a sequence and Runs is the number of increasing runs in a sequence. Deterministically finding the median has fragile complexity O(log (Runs ) + log log n) and Θ(log (Inv ) ). Deterministic sorting has fragile complexity Θ(log (Inv ) ) but it has fragile complexity Θ(log n) regardless of the number of runs.SCOPUS: cp.kinfo:eu-repo/semantics/publishe

DEMQOL and DEMQOL-Proxy: a Rasch analysis.

BACKGROUND: DEMQOL and DEMQOL-Proxy are widely used patient reported outcome measures (PROMs) of health related quality of life in people with dementia (PWD). Growing interest in routine use of PROMs in health care calls for more robust instruments that are potentially fit for reliable and valid comparisons at the micro-level (patients) and meso-level (clinics, hospitals, care homes). METHODS: We used modern psychometric methods (based on the Rasch model) to re-evaluate DEMQOL (1428 PWDs) and DEMQOL-Proxy (1022 carers) to ensure they are fit for purpose. We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, relationship), local independence, unidimensionality and reliability on the full set of items and a smaller item set. RESULTS: For both DEMQOL and DEMQOL-Proxy the smaller item set performed better than the original item set. We developed revised scores using the items from the smaller set. CONCLUSIONS: We have improved the scoring of DEMQOL and DEMQOL-Proxy using the Rasch measurement model. Future work should focus on the problems identified with content and response options