19 research outputs found
Ciudad en pandemia. Una aproximación desde la escala humana a las prioridades urbanas
The emergence of Covid-19 pandemic has highlighted inequalities in territories configuration. In Ecuador´s case, not all the people have had facilities to access to priority equipment, which are part of semipublic space. Starting from this background, many inquiries have surged regarding to which are the equipment citizens look for to cover their principal necessities and, which of them are near their places. To carry out this analysis it has been run a non-probably sample based on the application of a survey called “What do I need near my home – COVID 19?” This poll was made with the purpose to determine priority places people need to have around their home moreover how often people use these.
Secondly, as a result, with an indicators application was possible to define the influence radius of these places. This exercise made possible to understand which should be an appropriate neighborhoods configuration to lead to these territories the capability of providing first necessary services. The new possible essential services configuration, suggested by the indicators, could reduce unnecessary people movements and, consequently, the disease contagion and propagation risk, additionally, an improvement of settler’s life quality could be generated. Finally, to contribute and thus achieve sustainable and resilient territories, suggestions for city actors have been made
El surgimiento de la pandemia causada por la enfermedad del virus COVID-19 ha evidenciado desigualdades en la configuración de los territorios. En el caso del Ecuador, no todas las personas han tenido la facilidad de acceder a establecimientos de primera necesidad que forman parte del espacio semipúblico para satisfacer sus necesidades. Es entonces cuando surgen varias interrogantes respecto a cuáles son los equipamientos que la ciudadanía busca o requiere tener cerca de su domicilio. Para efectuar este análisis se ha realizado un muestreo no probabilístico con base a la aplicación de una encuesta por canales digitales denominada “¿Qué necesito cerca de mi casa? - COVID 19”, con la finalidad de determinar cuáles son los espacios prioritarios y la frecuencia con que la ciudadanía accede a este tipo de lugares. Posteriormente se ha realizado el análisis de los resultados por medio de la aplicación de indicadores que han permitido entender cuál debería ser la configuración del vecindario, con la finalidad de que estos territorios sean capaces de dotar de servicios de primera necesidad para que la comunidad pueda disminuir el riesgo de contagio y propagación de esta enfermedad y que además se genere una mejora en el modo de vida de los pobladores. Adicionalmente, se han planteado sugerencias para que los actores que se desenvuelven en la ciudad realicen sus aportes y lograr así el cometido de crear territorios sostenibles y resilientes
Clinical, radiologic, pathologic, and molecular characteristics of long-term survivors of diffuse intrinsic pontine glioma (DIPG): a collaborative report from the International and European Society for Pediatric Oncology DIPG registries
Purpose Diffuse intrinsic pontine glioma (DIPG) is a brainstem malignancy with a median survival of < 1 year. The International and European Society for Pediatric Oncology DIPG Registries collaborated to compare clinical, radiologic, and histomolecular characteristics between short-term survivors (STSs) and long-term survivors (LTSs). Materials and Methods Data abstracted from registry databases included patients from North America, Australia, Germany, Austria, Switzerland, the Netherlands, Italy, France, the United Kingdom, and Croatia. Results Among 1,130 pediatric and young adults with radiographically confirmed DIPG, 122 (11%) were excluded. Of the 1,008 remaining patients, 101 (10%) were LTSs (survival ≥ 2 years). Median survival time was 11 months (interquartile range, 7.5 to 16 months), and 1-, 2-, 3-, 4-, and 5-year survival rates were 42.3% (95% CI, 38.1% to 44.1%), 9.6% (95% CI, 7.8% to 11.3%), 4.3% (95% CI, 3.2% to 5.8%), 3.2% (95% CI, 2.4% to 4.6%), and 2.2% (95% CI, 1.4% to 3.4%), respectively. LTSs, compared with STSs, more commonly presented at age < 3 or > 10 years (11% v 3% and 33% v 23%, respectively; P < .001) and with longer symptom duration ( P < .001). STSs, compared with LTSs, more commonly presented with cranial nerve palsy (83% v 73%, respectively; P = .008), ring enhancement (38% v 23%, respectively; P = .007), necrosis (42% v 26%, respectively; P = .009), and extrapontine extension (92% v 86%, respectively; P = .04). LTSs more commonly received systemic therapy at diagnosis (88% v 75% for STSs; P = .005). Biopsies and autopsies were performed in 299 patients (30%) and 77 patients (10%), respectively; 181 tumors (48%) were molecularly characterized. LTSs were more likely to harbor a HIST1H3B mutation (odds ratio, 1.28; 95% CI, 1.1 to 1.5; P = .002). Conclusion We report clinical, radiologic, and molecular factors that correlate with survival in children and young adults with DIPG, which are important for risk stratification in future clinical trials
The genetic architecture of the human cerebral cortex
The cerebral cortex underlies our complex cognitive capabilities, yet little is known about the specific genetic loci that influence human cortical structure. To identify genetic variants that affect cortical structure, we conducted a genome-wide association meta-analysis of brain magnetic resonance imaging data from 51,665 individuals. We analyzed the surface area and average thickness of the whole cortex and 34 regions with known functional specializations. We identified 199 significant loci and found significant enrichment for loci influencing total surface area within regulatory elements that are active during prenatal cortical development, supporting the radial unit hypothesis. Loci that affect regional surface area cluster near genes in Wnt signaling pathways, which influence progenitor expansion and areal identity. Variation in cortical structure is genetically correlated with cognitive function, Parkinson's disease, insomnia, depression, neuroticism, and attention deficit hyperactivity disorder
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Optimizing Health Information Technologies for Symptom Management in Cancer Patients and Survivors: Usability Evaluation
Unmanaged cancer symptoms and treatment-related side effects can compromise long-term clinical outcomes and health-related quality of life. Health information technologies such as web-based platforms offer the possibility to supplement existing care and optimize symptom management.
This paper describes the development and usability of a web-based symptom management platform for cancer patients and survivors that will be implemented within a large health system.
A web-based symptom management platform was designed and evaluated via one-on-one usability testing sessions. The System Usability Scale (SUS), After Scenario Questionnaire (ASQ), and qualitative analysis of semistructured interviews were used to assess program usability.
Ten cancer survivors and five cancer center staff members participated in usability testing sessions. The mean score on the SUS was 86.6 (SD 14.0), indicating above average usability. The mean score on the ASQ was 2.5 (SD 2.1), indicating relatively high satisfaction with the usability of the program. Qualitative analyses identified valued features of the program and recommendations for further improvements.
Cancer survivors and oncology care providers reported high levels of acceptability and usability in the initial development of a web-based symptom management platform for cancer survivors. Future work will test the effectiveness of this web-based platform
Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease
BackgroundPatient-reported outcomes—symptoms, treatment side effects, and health-related quality of life—are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients’ symptom monitoring, shared decision-making, and effective use of the health care system.
ObjectiveThe objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes.
MethodsCo-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized.
ResultsThe dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective.
ConclusionsThis protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems.
International Registered Report Identifier (IRRID)DERR1-10.2196/3846
SMOKING CESSATION IN PATIENTS WITH RA IS ASSOCIATED WITH REDUCED CVD EVENT RATES AND IMPROVED LIPID PROFILES AND PREDICTS LOWER RA DISEASE ACTIVITY
Clinical, Radiologic, Pathologic, and Molecular Characteristics of Long-Term Survivors of Diffuse Intrinsic Pontine Glioma (DIPG): A Collaborative Report From the International and European Society for Pediatric Oncology DIPG Registries
Purpose Diffuse intrinsic pontine glioma (DIPG) is a brainstem malignancy with a median survival of 10 years (11% v 3% and 33% v 23%, respectively; P < .001) and with longer symptom duration ( P < .001). STSs, compared with LTSs, more commonly presented with cranial nerve palsy (83% v 73%, respectively; P = .008), ring enhancement (38% v 23%, respectively; P = .007), necrosis (42% v 26%, respectively; P = .009), and extrapontine extension (92% v 86%, respectively; P = .04). LTSs more commonly received systemic therapy at diagnosis (88% v 75% for STSs; P = .005). Biopsies and autopsies were performed in 299 patients (30%) and 77 patients (10%), respectively; 181 tumors (48%) were molecularly characterized. LTSs were more likely to harbor a HIST1H3B mutation (odds ratio, 1.28; 95% CI, 1.1 to 1.5; P = .002). Conclusion We report clinical, radiologic, and molecular factors that correlate with survival in children and young adults with DIPG, which are important for risk stratification in future clinical trials