Riesgo de recurrencia dinámico en pacientes con microcarcinoma de tiroides con y sin ablación con Yodo-131 / Dynamic risk of recurrence in patients with thyroid microcarcinoma with and without iodine-131 ablation

Introducción: El cáncer diferenciado de tiroides ha incrementado su incidencia en las últimas 3 décadas debido al sobrediagnóstico de tumores pequeños o microcarcinomas, las nuevas tendencias en su manejo hacen de la cirugía y la terapia con iodo radioactivo el tratamiento de elección para casos seleccionados. El manejo actual de microcarcinoma de tiroides se basa en el riesgo de recurrencia inicial y su seguimiento en el tiempo con el riesgo de recurrencia dinámico. Objetivo: El presente trabajo se enfocó en analizar el riesgo de recurrencia dinámico en pacientes con microcarcinoma de tiroides que recibieron o no terapia ablativa con Iodo 131 posterior a tratamiento quirúrgico en el Hospital Teodoro Maldonado Carbo durante los años 2016 ­ 2018. Métodos: Se realizó un estudio ambispectivo, no experimental, descriptivo, analítico, transversal y correlacional. Se analizaron 51 pacientes atendidos en la unidad técnica de endocrinología. Resultados: De un total de 51 casos de microcarcinoma, el 60% fue tratado con terapia ablativa, la respuesta inicial fue excelente en el 53.3% de pacientes ablacionados y en el 66.7% de los casos no ablacionados. El riesgo de recurrencia inicial fue significativamente más bajo en el grupo no tratado mediante ablación (100%), mientras que en el tratado con ablación fue bajo, intermedio y alto en 16 (53.3%), 7 (23.3) y 7 (23.3), respectivamente. Conclusiones: Existe un riesgo bajo de recurrencia dinámico, independientemente de la indicación de terapia ablativa con I131, la estratificación del riesgo de recurrencia constituye una herramienta útil para seleccionar aquellos pacientes que deben recibir iodo radioactivo.

Introduction: Differentiated thyroid cancer has increased its incidence in the last 3 decades due to overdiagnosis of small tumors or microcarcinomas; new trends in its management make surgery and radioactive iodine therapy the treatment of choice for selected cases. The current management of thyroid microcarcinoma is based on the initial risk of recurrence and its follow-up over time with the dynamic risk of recurrence. Objective: The present work focused on analyzing the risk of dynamic recurrence in patients with thyroid microcarcinoma who received or did not receive ablative therapy with Iodine 131 after surgical treatment at the Teodoro Maldonado Carbo Hospital during the years 2016 - 2018. Methods: An ambispective, non-experimental, descriptive, analytical, cross-sectional, and correlational study was carried out. Fifty-one patients treated at the endocrinology technical unit were analyzed. Results: Of 51 cases of microcarcinoma, 60% were treated with ablative therapy, and the initial response was excellent in 53.3% of ablated patients and 66.7% of non-ablated cases. The initial recurrence risk was significantly lower in the group not treated by ablation (100%). In contrast, in the group treated with ablation, it was low, intermediate, and high in 16 (53.3%), 7 (23.3), and 7 (23.3), respectively. Conclusions: There is a low risk of dynamic recurrence, regardless of the indication for ablative therapy with I131; a recurrence risk stratification is a helpful tool for selecting those patients who should receive radioactive iodine.

Effects of Teacher Enthusiasm and Type of Text on the Motivation and Achievement of Schoolchildren.

This study aims to analyze the effects of teacher enthusiasm and type of text on student motivation and achievement. The participants were 369 elementary school students. We used four videos showing a teacher presenting two texts (narrative or descriptive) in two conditions of enthusiasm (high or neutral). A MANOVA revealed additive effects due to enthusiasm and text type on motivation and achievement, but no interaction. Mediation analyzes indicated that enthusiasm showed direct and indirect effects through motivation only for descriptive text. Therefore, the motivational mediation between teacher enthusiasm and student achievement could be especially important when the text is descriptive.

Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.

BACKGROUND: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. METHODS: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. RESULTS: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. CONCLUSIONS: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.

Recommendations for Improving the Quality of Rare Disease Registries.

Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

Epidemiología de la acromegalia en Ecuador / Epidemiology of acromegaly in Ecuador

Objetivos: Evaluar la epidemiología de la acromegalia en la ciudad de Guayaquil (Ecuador) y comparar nuestros resultados con los reportados en la literatura. Pacientes, material y métodos: Estudio de recolección de datos retrospectivos y prospectivos de todos los pacientes con acromegalia que acudieron a los consultorios de endocrinología de los 4 principales hospitales de la red pública de salud en la ciudad, desde enero de 2000 hasta diciembre de 2014. Se registró la edad al diagnóstico, tiempo estimado de retraso en el diagnóstico, estudios de imagen de hipófisis, nivel basal de la hormona de crecimiento (GH), GH después de la sobrecarga oral de glucosa (SOG-GH) y concentraciones séricas de factor de crecimiento insulínico 1 (IGF-1). Calculamos la incidencia y prevalencia de la enfermedad utilizando la información del censo de población y vivienda del año 2010. Resultados: Se registraron 48 casos en el periodo de estudio, de los cuales 17 eran hombres (35,4%) y 31 mujeres (64,5%); relación M/H=1,8:1. El promedio global de edad al diagnóstico fue 47,3±16,8 años (rango 18 a 86). El tiempo de retraso en el diagnóstico fue 7,3±6,3 años (rango 1 a 30). En los hombres el promedio de edad al diagnóstico fue de 47,9±18,2 años y en las mujeres de 46,3±15,8 años. El tiempo de retraso en el diagnóstico fue de 10,2±7,9 y de 5,7±3,9 años en hombres y mujeres, respectivamente. La prevalencia de acromegalia es 18,7 casos/millón habitantes y la incidencia es de 1,3 casos/millón personas/año. Conclusiones: Existe predominio de la enfermedad en mujeres, se diagnostica en la cuarta década, con un retraso en el diagnóstico de alrededor de 8 años, que suele ser aún mayor en hombres. La incidencia y prevalencia son más bajas que las descritas en series internacionales. Existe subdiagnóstico y subregistro de la enfermedad en nuestro país (AU)

Objectives: To assess the epidemiology of acromegaly in the city of Guayaquil, Ecuador, and to compare our results to those reported in the literature. Patients, material and methods: An analysis was made of retrospective and prospective data from all patients with acromegaly attending endocrinology clinics at the 4 main hospitals of the public health network of Guayaquil from January 2000 to December 2014. Age at diagnosis, estimated delay in diagnosis, imaging studies of pituitary gland, basal growth hormone (GH) level, GH after an oral glucose tolerance test (OGTT-GH), and serum levels of insulin-like growth factor 1 (IGF-1) were recorded. Incidence and prevalence of the disease were estimated using information from the 2010 census of population and housing. Results: Forty-eight cases were recorded in the study period in 17 males (35.4%) and 31 females (64.5%); M/F ratio=1.8:1. Mean age at diagnosis was 47.3±16.8 years (range 18-86). Delay in diagnosis was 7.3±6.3 years (range 1-30). Mean age at diagnosis was 47.9±18.2 years in males and 46.3±15.8 years in females. Delay in diagnosis was 10.2±7.9 and 5.7±3.9 years in males and females, respectively. Prevalence of acromegaly is 18.7 cases per million inhabitants, and incidence of acromegaly 1.3 cases per million people per year. Conclusions: Acromegaly predominates in females, and is diagnosed in the fourth decade with a delay of approximately 8 years, usually even longer in males. Incidence and prevalence are lower than reported in international series. The disease is underdiagnosed and underreported in Ecuador (AU)

Epidemiology of acromegaly in Ecuador. / Epidemiología de la acromegalia en Ecuador.

OBJECTIVES: To assess the epidemiology of acromegaly in the city of Guayaquil, Ecuador, and to compare our results to those reported in the literature. PATIENTS, MATERIAL AND METHODS: An analysis was made of retrospective and prospective data from all patients with acromegaly attending endocrinology clinics at the 4 main hospitals of the public health network of Guayaquil from January 2000 to December 2014. Age at diagnosis, estimated delay in diagnosis, imaging studies of pituitary gland, basal growth hormone (GH) level, GH after an oral glucose tolerance test (OGTT-GH), and serum levels of insulin-like growth factor 1 (IGF-1) were recorded. Incidence and prevalence of the disease were estimated using information from the 2010 census of population and housing. RESULTS: Forty-eight cases were recorded in the study period in 17 males (35.4%) and 31 females (64.5%); M/F ratio=1.8:1. Mean age at diagnosis was 47.3±16.8 years (range 18-86). Delay in diagnosis was 7.3±6.3 years (range 1-30). Mean age at diagnosis was 47.9±18.2 years in males and 46.3±15.8 years in females. Delay in diagnosis was 10.2±7.9 and 5.7±3.9 years in males and females, respectively. Prevalence of acromegaly is 18.7 cases per million inhabitants, and incidence of acromegaly 1.3 cases per million people per year. CONCLUSIONS: Acromegaly predominates in females, and is diagnosed in the fourth decade with a delay of approximately 8 years, usually even longer in males. Incidence and prevalence are lower than reported in international series. The disease is underdiagnosed and underreported in Ecuador.

Fish consumption patterns and hair mercury levels in children and their mothers in 17 EU countries.

The toxicity of methylmercury (MeHg) in humans is well established and the main source of exposure is via the consumption of large marine fish and mammals. Of particular concern are the potential neurodevelopmental effects of early life exposure to low-levels of MeHg. Therefore, it is important that pregnant women, children and women of childbearing age are, as far as possible, protected from MeHg exposure. Within the European project DEMOCOPHES, we have analyzed mercury (Hg) in hair in 1799 mother-child pairs from 17 European countries using a strictly harmonized protocol for mercury analysis. Parallel, harmonized questionnaires on dietary habits provided information on consumption patterns of fish and marine products. After hierarchical cluster analysis of consumption habits of the mother-child pairs, the DEMOCOPHES cohort can be classified into two branches of approximately similar size: one with high fish consumption (H) and another with low consumption (L). All countries have representatives in both branches, but Belgium, Denmark, Spain, Portugal and Sweden have twice as many or more mother-child pairs in H than in L. For Switzerland, Czech Republic, Hungary, Poland, Romania, Slovenia and Slovakia the situation is the opposite, with more representatives in L than H. There is a strong correlation (r=0.72) in hair mercury concentration between the mother and child in the same family, which indicates that they have a similar exposure situation. The clustering of mother-child pairs on basis of their fish consumption revealed some interesting patterns. One is that for the same sea fish consumption, other food items of marine origin, like seafood products or shellfish, contribute significantly to the mercury levels in hair. We conclude that additional studies are needed to assess and quantify exposure to mercury from seafood products, in particular. The cluster analysis also showed that 95% of mothers who consume once per week fish only, and no other marine products, have mercury levels 0.55 µg/g. Thus, the 95th percentile of the distribution in this group is only around half the US-EPA recommended threshold of 1 µg/g mercury in hair. Consumption of freshwater fish played a minor role in contributing to mercury exposure in the studied cohort. The DEMOCOPHES data shows that there are significant differences in MeHg exposure across the EU and that exposure is highly correlated with consumption of fish and marine products. Fish and marine products are key components of a healthy human diet and are important both traditionally and culturally in many parts of Europe. Therefore, the communication of the potential risks of mercury exposure needs to be carefully balanced to take into account traditional and cultural values as well as the potential health benefits from fish consumption. European harmonized human biomonitoring programs provide an additional dimension to national HMB programs and can assist national authorities to tailor mitigation and adaptation strategies (dietary advice, risk communication, etc.) to their country's specific requirements.

First steps toward harmonized human biomonitoring in Europe: demonstration project to perform human biomonitoring on a European scale.

BACKGROUND: For Europe as a whole, data on internal exposure to environmental chemicals do not yet exist. Characterization of the internal individual chemical environment is expected to enhance understanding of the environmental threats to health. OBJECTIVES: We developed and applied a harmonized protocol to collect comparable human biomonitoring data all over Europe. METHODS: In 17 European countries, we measured mercury in hair and cotinine, phthalate metabolites, and cadmium in urine of 1,844 children (5-11 years of age) and their mothers. Specimens were collected over a 5-month period in 2011-2012. We obtained information on personal characteristics, environment, and lifestyle. We used the resulting database to compare concentrations of exposure biomarkers within Europe, to identify determinants of exposure, and to compare exposure biomarkers with health-based guidelines. RESULTS: Biomarker concentrations showed a wide variability in the European population. However, levels in children and mothers were highly correlated. Most biomarker concentrations were below the health-based guidance values. CONCLUSIONS: We have taken the first steps to assess personal chemical exposures in Europe as a whole. Key success factors were the harmonized protocol development, intensive training and capacity building for field work, chemical analysis and communication, as well as stringent quality control programs for chemical and data analysis. Our project demonstrates the feasibility of a Europe-wide human biomonitoring framework to support the decision-making process of environmental measures to protect public health.