المؤلفون: Luísa Moreira de Ávila, Paulo Roberto Nassar de Carvalho, Renato Augusto Moreira de Sá, Saint Clair Gomes Junior, Edward Araujo Júnior

المصدر: São Paulo Medical Journal, Vol 142, Iss 5 (2024)

مصطلحات موضوعية: Fetus, Surgical Procedures, Operative, Perinatal Mortality, Maternal-Child Health Centers, Fetal Surgery, Perinatal Outcomes, Maternal Outcomes, Reference Centers, Medicine

الوصف: ABSTRACT BACKGROUND: Concerns regarding high open surgery-related maternal morbidity have led to improvements in minimally invasive fetal surgeries. OBJECTIVE: To analyze the perinatal and maternal outcomes of minimally invasive fetal surgery performed in Rio de Janeiro, Brazil. DESIGN AND SETTING: Retrospective cohort study conducted in two tertiary reference centers. METHODS: This retrospective descriptive study was conducted using medical records from 2011 to 2019. The outcomes included maternal and pregnancy complications, neonatal morbidity, and mortality from the intrauterine period to hospital discharge. RESULTS: Fifty mothers and 70 fetuses were included in this study. The pathologies included twin-twin transfusion syndrome, congenital diaphragmatic hernia, myelomeningocele, lower urinary tract obstruction, pleural effusion, congenital upper airway obstruction syndrome, and amniotic band syndrome. Regarding maternal complications, 8% had anesthetic complications, 12% had infectious complications, and 6% required blood transfusions. The mean gestational age at surgery was 25 weeks, the mean gestational age at delivery was 33 weeks, 83% of fetuses undergoing surgery were born alive, and 69% were discharged from the neonatal intensive care unit. CONCLUSION: Despite the small sample size, we demonstrated that minimally invasive fetal surgeries are safe for pregnant women. Perinatal mortality and prematurity rates in this study were comparable to those previously. Prematurity remains the most significant problem associated with fetal surgery.

وصف الملف: electronic resource

العلاقة: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-31802024000500209&lng=en&tlng=enTest; http://www.scielo.br/pdf/spmj/v142n5/1806-9460-spmj-142-05-e2023159.pdfTest; https://doaj.org/toc/1806-9460Test

الوصول الحر: https://doaj.org/article/696b298e712f49a0a59b19cfb177fa8eTest

المؤلفون: Pierre Kubicek, Axel Le Cesne, Cyril Lervat, Maud Toulmonde, Christine Chevreau, Florence Duffaud, Louis-Romée Le Nail, Magali Morelle, Nathalie Gaspar, Cécile Vérité, Marie-Pierre Castex, Nicolas Penel, Esma Saada, Sylvain Causeret, François Bertucci, Christophe Perrin, Emmanuelle Bompas, Daniel Orbach, Valérie Laurence, Sophie Piperno-Neumann, Philippe Anract, Maria Rios, Jean-Claude Gentet, Éric Mascard, Stéphanie Pannier, Pascale Blouin, Sébastien Carrère, Loïc Chaigneau, Pauline Soibinet-Oudot, Nadège Corradini, Pascaline Boudou-Rouquette, Jean-Christophe Ruzic, Valérie Lebrun-Ly, Pascale Dubray-Longeras, Sharmini Varatharajah, Céleste Lebbe, Mickaël Ropars, Jean-Emmanuel Kurtz, Cécile Guillemet, Jean-Pierre Lotz, Juliane Berchoud, Grégory Cherrier, Françoise Ducimetière, Claire Chemin, Antoine Italiano, Charles Honoré, Emmanuel Desandes, Jean-Yves Blay, François Gouin, Perrine Marec-Bérard

المصدر: BMC Cancer, Vol 23, Iss 1, Pp 1-11 (2023)

مصطلحات موضوعية: Adolescents and young adults, AYAs, Sarcoma, Management, Multidisciplinary tumor board, Reference centers, Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282

الوصف: Abstract Background The initial management of patients with sarcoma is a critical issue. We used the nationwide French National Cancer Institute-funded prospective sarcoma database NETSARC to report the management and oncologic outcomes in adolescents and young adults (AYAs) patients with sarcoma at the national level. Patients and methods NETSARC database gathers regularly monitored and updated data from patients with sarcoma. NETSARC was queried for patients (15–30 years) with sarcoma diagnosed from 2010 to 2017 for whom tumor resection had been performed. We reported management, locoregional recurrence-free survival (LRFS), progression-free survival (PFS), and overall survival (OS) in AYA treated in French reference sarcoma centers (RSC) and outside RSC (non-RSC) and conducted multivariable survival analyses adjusted for classical prognostic factors. Results Among 3,227 patients aged 15–30 years with sarcoma diagnosed between 2010 and 2017, the study included 2,227 patients with surgery data available, among whom 1,290 AYAs had been operated in RSC, and 937 AYAs in non-RSC. Significant differences in compliance to guidelines were observed including pre-treatment biopsy (RSC: 85.9%; non-RSC 48.1%), pre-treatment imaging (RSC: 86.8%; non-RSC: 56.5%) and R0 margins (RSC 57.6%; non-RSC: 20.2%) (p

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1471-2407Test

الوصول الحر: https://doaj.org/article/818492c9520b4b0e97c3002982a8e77aTest

المؤلفون: Kubicek, P., Cesne, A. L., Lervat, C., Toulmonde, M., Chevreau, C., Duffaud, F., Le Nail, L. R., Morelle, M., Gaspar, N., Vérité, C., Castex, M. P., Penel, Nicolas, Saada, E., Causeret, S., Bertucci, F., Perrin, C., Bompas, E., Orbach, D., Laurence, V., Piperno-Neumann, S., Anract, P., Rios, M., Gentet, J. C., Mascard, É., Pannier, S., Blouin, P., Carrère, S., Chaigneau, L., Soibinet-Oudot, P., Corradini, N., Boudou-Rouquette, P., Ruzic, J. C., Lebrun-Ly, V., Dubray-Longeras, P., Varatharajah, S., Lebbe, C., Ropars, M., Kurtz, J. E., Guillemet, C., Lotz, J. P., Berchoud, J., Cherrier, G., Ducimetière, F., Chemin, C., Italiano, A., Honoré, C., Desandes, E., Blay, J. Y., Gouin, F., Marec-Bérard, P.

المساهمون: Institut de Cancérologie de l'Ouest Angers/Nantes (UNICANCER/ICO), UNICANCER, Centre Léon Bérard Lyon, Institut Gustave Roussy (IGR), Centre Régional de Lutte contre le Cancer Oscar Lambret Lille (UNICANCER/Lille), Université de Lille-UNICANCER, Institut Bergonié Bordeaux, Institut Claudius Regaud, Hôpital de la Timone CHU - APHM (TIMONE), CHU Trousseau Tours, Centre Hospitalier Régional Universitaire de Tours (CHRU Tours), Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), Centre de Lutte contre le Cancer Antoine Lacassagne Nice (UNICANCER/CAL), UNICANCER-Université Côte d'Azur (UniCA), Service de chirurgie Centre Georges-François Leclerc, Centre Régional de Lutte contre le cancer Georges-François Leclerc Dijon (UNICANCER/CRLCC-CGFL), UNICANCER-UNICANCER, Institut Paoli-Calmettes (IPC), Fédération nationale des Centres de lutte contre le Cancer (FNCLCC), CRLCC Eugène Marquis (CRLCC), Institut Curie Paris, Hôpital Cochin AP-HP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Institut de Cancérologie de Lorraine - Alexis Vautrin Nancy (UNICANCER/ICL), Hôpital Necker - Enfants Malades AP-HP, Institut régional de Cancérologie de Montpellier (ICM), UNICANCER - Institut régional du Cancer Montpellier Val d'Aurelle (ICM), CRLCC Val d'Aurelle - Paul Lamarque, Service d'Oncologie Médicale CHRU Besançon, Centre Hospitalier Régional Universitaire de Besançon (CHRU Besançon)-Université de Franche-Comté (UFC), Université Bourgogne Franche-Comté COMUE (UBFC)-Université Bourgogne Franche-Comté COMUE (UBFC), Institut Jean Godinot Reims, Institut d'hématologie et d'oncologie pédiatrique CHU - HCL (IHOPe), Hospices Civils de Lyon (HCL), Centre Hospitalier de Mayotte, Hôpital Dupuytren CHU Limoges, Centre Jean Perrin Clermont-Ferrand (UNICANCER/CJP), Centre Régional de Lutte contre le Cancer François Baclesse Caen (UNICANCER/CRLC), Normandie Université (NU)-UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN), Hopital Saint-Louis AP-HP (AP-HP), Centre Hospitalier Universitaire de Rennes CHU Rennes = Rennes University Hospital Ponchaillou, Institut de Cancérologie de Strasbourg Europe (ICANS), Centre de Lutte Contre le Cancer Henri Becquerel Normandie Rouen (CLCC Henri Becquerel), CHU Tenon AP-HP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Centre Hospitalier Universitaire de Nantes = Nantes University Hospital (CHU Nantes), Centre for Research in Epidemiology and Statistics, Conservatoire National des Arts et Métiers CNAM (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Cité (UPCité)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy), ANR-10-LABX-0061,DEVWECAN,Development Cancer and Targeted Therapies(2010), ANR-17-CONV-0002,PLASCAN,Institut François Rabelais pour la recherche multidisciplinaire sur le cancer(2017), ANR-18-RHUS-0009,DEPGYN,Clinical proof of concept of dependence receptor targeting in gynecological Oncology(2018)

المصدر: ISSN: 1471-2407.

مصطلحات موضوعية: NETSARC, Adolescents and young adults, AYAs, Sarcoma, Management, Multidisciplinary tumor board, Reference centers, Survival, [SDV]Life Sciences [q-bio]

الوصف: International audience ; BackgroundThe initial management of patients with sarcoma is a critical issue. We used the nationwide French National Cancer Institute-funded prospective sarcoma database NETSARC to report the management and oncologic outcomes in adolescents and young adults (AYAs) patients with sarcoma at the national level.Patients and methodsNETSARC database gathers regularly monitored and updated data from patients with sarcoma. NETSARC was queried for patients (15–30 years) with sarcoma diagnosed from 2010 to 2017 for whom tumor resection had been performed. We reported management, locoregional recurrence-free survival (LRFS), progression-free survival (PFS), and overall survival (OS) in AYA treated in French reference sarcoma centers (RSC) and outside RSC (non-RSC) and conducted multivariable survival analyses adjusted for classical prognostic factors.ResultsAmong 3,227 patients aged 15–30 years with sarcoma diagnosed between 2010 and 2017, the study included 2,227 patients with surgery data available, among whom 1,290 AYAs had been operated in RSC, and 937 AYAs in non-RSC. Significant differences in compliance to guidelines were observed including pre-treatment biopsy (RSC: 85.9%; non-RSC 48.1%), pre-treatment imaging (RSC: 86.8%; non-RSC: 56.5%) and R0 margins (RSC 57.6%; non-RSC: 20.2%) (p < 0.001). 3y-OS rates were 81.1% (95%CI 78.3–83.6) in AYA in RSC and 82.7% (95%CI 79.4–85.5) in AYA in non-RSC, respectively. Whereas no significant differences in OS was observed in AYAs treated in RSC and in non-RSC, LRFS and PFS were improved in AYAs treated in RSC compared to AYAs treated in non-RSC (Hazard Ratios (HR): 0.58 and 0.83, respectively).ConclusionsThis study highlights the importance for AYA patients with sarcoma to be managed in national sarcoma reference centers involving multidisciplinary medical teams with paediatric and adult oncologists.

العلاقة: info:eu-repo/semantics/altIdentifier/pmid/36670431; hal-04315885; https://hal.univ-lille.fr/hal-04315885Test; https://hal.univ-lille.fr/hal-04315885/documentTest; https://hal.univ-lille.fr/hal-04315885/file/s12885-023-10556-4.pdfTest; PUBMED: 36670431; PUBMEDCENTRAL: PMC9854049

الإتاحة: https://doi.org/10.1186/s12885-023-10556-4Test
https://hal.univ-lille.fr/hal-04315885Test
https://hal.univ-lille.fr/hal-04315885/documentTest
https://hal.univ-lille.fr/hal-04315885/file/s12885-023-10556-4.pdfTest

المؤلفون: Álvarez Álvarez, Rosa, Valverde Morales, Claudia, Agra Pujol, Carolina, Méndez Fernández, Ramiro Jesús, Muñoz Fernández, María De Las Mercedes, Asencio Pascual, José Manuel

مصطلحات موضوعية: 616-006.04, Retroperitoneal sarcoma, Soft tissue sarcoma, Retroperitoneum, Multidisciplinary board, Reference centers, Oncología, 3201.01 Oncología

الوصف: Soft tissue sarcomas (STS) are an uncommon and biologically heterogeneous group of tumors arising from mesenchymal cells. The incidence is estimated at five cases per 100,000 people per year. Retroperitoneal sarcomas (RPS) account for 10–15% of all STS, and their management depends on their anatomical characteristics and histotype. Due to their very low incidence, it is recommended that RPS be treated in reference centers and evaluated by an experienced multidisciplinary team (MDT). In Spain, the Spanish Group for Research in Sarcomas (GEIS) brings together experts from various specialties to promote research on sarcomas and improve treatment results. This paper summarizes the GEIS recommendations for the diagnosis, treatment, and follow-up of patients with RPS. ; Depto. de Medicina Legal, Psiquiatría y Patología ; Depto. de Radiología, Rehabilitación y Fisioterapia ; Fac. de Medicina ; TRUE ; pub

وصف الملف: application/pdf

العلاقة: https://hdl.handle.net/20.500.14352/103592Test; Álvarez Álvarez, R.; Manzano, A.; Agra Pujol, C.; Artigas Raventós, V.; Correa, R.; Cruz Jurado, J.; Fernandez, J.A.; Garcia del Muro, X.; Gonzalez, J.A.; Hindi, N.; et al. Updated Review and Clinical Recommendations for the Diagnosis and Treatment of Patients with Retroperitoneal Sarcoma by the Spanish Sarcoma Research Group (GEIS). Cancers 2023, 15, 3194. https://doi.org/10.3390/cancers15123194Test; https://www.mdpi.com/2072-6694/15/12/3194Test

الإتاحة: https://doi.org/20.500.14352/103592Test
https://doi.org/10.3390/cancers15123194Test
https://hdl.handle.net/20.500.14352/103592Test
https://www.mdpi.com/2072-6694/15/12/3194Test

المؤلفون: Rosa Álvarez Álvarez, Aránzazu Manzano, Carolina Agra Pujol, Vicente Artigas Raventós, Raquel Correa, Josefina Cruz Jurado, Juan Angel Fernandez, Xavier Garcia del Muro, Jose Antonio Gonzalez, Nadia Hindi, Pablo Lozano Lominchar, Javier Martínez-Trufero, Ramiro Méndez, Mercedes Muñoz, Cristobal Muñoz Casares, Francisco Orbis Castellanos, Ruth Orellana Fernandez, Miguel Paniagua González, Andres Redondo, Claudia Valverde Morales, Jose Manuel Asencio

المصدر: Cancers; Volume 15; Issue 12; Pages: 3194

مصطلحات موضوعية: retroperitoneal sarcoma, soft tissue sarcoma, retroperitoneum, multidisciplinary board, reference centers

الوصف: Soft tissue sarcomas (STS) are an uncommon and biologically heterogeneous group of tumors arising from mesenchymal cells. The incidence is estimated at five cases per 100,000 people per year. Retroperitoneal sarcomas (RPS) account for 10–15% of all STS, and their management depends on their anatomical characteristics and histotype. Due to their very low incidence, it is recommended that RPS be treated in reference centers and evaluated by an experienced multidisciplinary team (MDT). In Spain, the Spanish Group for Research in Sarcomas (GEIS) brings together experts from various specialties to promote research on sarcomas and improve treatment results. This paper summarizes the GEIS recommendations for the diagnosis, treatment, and follow-up of patients with RPS.

وصف الملف: application/pdf

العلاقة: https://dx.doi.org/10.3390/cancers15123194Test

الإتاحة: https://doi.org/10.3390/cancers15123194Test

المؤلفون: Velasco Morgado, Raúl

مصطلحات موضوعية: Molecularización, Enfermedades raras, Centros de referencia, Molecularization, Rare diseases, Reference centers

الوصف: En conjunto, la molecularización y la genetización de la biomedicina del siglo XX construyeron un enorme listado de enfermedades, la mayoría raras, con unas necesidades asistenciales muy específicas, una gran dependencia del laboratorio e importantes dificultades para la creación de expertos. Estos fenómenos indujeron grandes cambios en las redes asistenciales y en los itinerarios diagnósticos. Uno de los más significativos fue la aparición de centros de referencia en los que concentrar los recursos humanos y materiales para enfermedades tan poco prevalentes. A partir del estudio del Instituto de Bioquímica Clínica “Fundación Juan March” de Barcelona, este artículo aborda la aparición de estos nuevos espacios en la España del Tardofranquismo. Farmacéuticos, pediatras, políticos y gestores sanitarios, con sus diferentes intereses, aparecen como actores involucrados en la forja de un instituto que en pocos años se erigió como centro de referencia nacional para enfermedades de depósito lisosomal. El trabajo revela la importancia que tuvo la sensibilidad social sobre la discapacidad intelectual como motor (y excusa) de la iniciativa, el papel de las fundaciones filantrópicas y la influencia de la ciencia norteamericana en todo el proceso, en circulación a través de los viajes de los científicos españoles al extranjero. ; Proyecto “Investigación, redes asistenciales y empoderamiento: respuestas sociales y científicas a las enfermedades raras en la Península Ibérica (1940-2015)” (HAR2017-87318P), financiado por el Ministerio de Ciencia, Innovación y Universidades

العلاقة: Velasco Morgado, R. (2022). Molecularización, genetización y centros de referencia: el Instituto de Bioquímica Clínica de Barcelona (1969-1980). Dynamis, 42(2), 371–396. [https://doi.org/10.30827/dynamis.v42i2.27714Test]; https://hdl.handle.net/10481/85564Test

الإتاحة: https://doi.org/10.30827/dynamis.v42i2.27714Test
https://hdl.handle.net/10481/85564Test

المؤلفون: Velasco Morgado, Raúl

المصدر: Dynamis; Vol. 42 Núm. 2 (2022): Rare diseases: social movements, visual practices, and clinical care; 371-396 ; 0211-9536

مصطلحات موضوعية: molecularization, rare diseases, reference centers, diagnostic itineraries, cytogenetics, molecularización, enfermedades raras, centros de referencia, itinerarios diagnósticos, citogenética

الوصف: Taken together, the molecularization and geneticization of biomedicine during the 20th century produced a long list of diseases, mostly rare, with very specific needs, a high dependence on the laboratory, and substantial difficulties in the creation of experts. These phenomena led to major changes in healthcare networks and diagnostic circuits. One of the most significant was the creation of centers of reference to concentrate human and material resources for low-prevalence diseases. Based on a study of the “Fundación Juan March” Institute of Clinical Biochemistry in Barcelona, this article addresses the emergence of those new spaces during late Francoism in Spain. Pharmacists, pediatricians, politicians, and healthcare managers, with their different interests, appear as actors involved in forging an institute that in a few years became a national reference center for lysosomal storage diseases. The paper reveals the importance of social sensitivity towards intellectual disability as driving force of (and excuse for) the initiative, the role of philanthropic foundations, and the influence of North American science in the whole process through trips abroad by Spanish scientists. ; En conjunto, la molecularización y la genetización de la biomedicina del siglo XX construyeron un enorme listado de enfermedades, la mayoría raras, con unas necesidadesasistenciales muy específicas, una gran dependencia del laboratorio e importantes dificultades para la creación de expertos. Estos fenómenos indujeron grandes cambios en las redes asistenciales y en los itinerarios diagnósticos. Uno de los más significativos fue la aparición de centros de referencia en los que concentrar los recursos humanos y materiales para enfermedades tan poco prevalentes. A partir del estudio del Instituto de Bioquímica Clínica “Fundación Juan March” de Barcelona, este artículo aborda la aparición de estos nuevos espacios en la España del Tardofranquismo. Farmacéuticos, pediatras, políticos y gestores sanitarios, con sus diferentes intereses, ...

وصف الملف: application/pdf

العلاقة: https://revistaseug.ugr.es/index.php/dynamis/article/view/27714/26196Test; https://revistaseug.ugr.es/index.php/dynamis/article/view/27714Test

الإتاحة: https://revistaseug.ugr.es/index.php/dynamis/article/view/27714Test

المؤلفون: Silva, Laelson Felipe da

المساهمون: Oliveira, Henry Poncio Cruz de, http://lattes.cnpq.br/4231993792347599Test

مصطلحات موضوعية: Ciência da informação, Arquitetura da informação, Ecologias informacionais complexas, Centros de Referência de Direitos Humanos LGBTQIA+, Políticas públicas, Information architercture, Complex infomational ecology, LGBTQIA+ Human Rights Reference Centers, Public policies, CNPQ::CIENCIAS SOCIAIS APLICADAS::CIENCIA DA INFORMACAO

الوصف: The study presents the informational environments of LGBTQIA+ Human Rights Reference Centers in Brazil. It considers the context of development of public policies targeting marginalized groups in the country, taking into account their deinstitutionalization process. Problematising the constitution of physical and digital environments of LGBTQIA+ Human Rights Reference Centers, based on the theoretical-conceptual elements of Information Architecture in its informational approach, in light of the continuous transformations of information and communication technologies. It demonstrates its relevance by introducing reflections on a problem/object that is still underexplored from the perspective of Information Architecture in the field of Information Science. It is inferred that if implemented, the elements of informational architecture have the potential to generate applications that will expand the reach of services offered by LGBTQIA+ Human Rights Reference Centers. It raises the question: How to model complex informational ecologies for LGBTQIA+ Reference Centers in Brazil using Information Architecture? The objective is to develop a model for the development of a complex informational ecology for LGBTQIA+ Human Rights Reference Centers. The study considers the population to be the 38 centers whose existence was confirmed during the research survey stage. The sample, non-probabilistic in nature, selected based on accessibility and typicality criteria, corresponds to 14 centers. The quadripolar method is used to guide the investigative path given its flexibility and adaptability in analyzing problems/objects constituted from the Social Sciences. The study is characterized by a qualiquantitative approach, applied in nature, and has exploratory and propositional objectives. It employs a combination of bibliographic, documentary, and field research as its research instruments. The data collection instrument used is the questionnaire. The analysis employs the Methodological Essay for Pervasive Information Architecture ...

العلاقة: https://repositorio.ufpb.br/jspui/handle/123456789/29487Test

الإتاحة: https://repositorio.ufpb.br/jspui/handle/123456789/29487Test

المؤلفون: Vieira, Taiane Alves, Trapp, Franciele Barbosa, Souza, Carolina Fischinger Moura de, Faccini, Lavínia Schuler, Jardim, Laura Bannach, Schwartz, Ida Vanessa Doederlein, Riegel, Mariluce, Vargas, Carmen Regla, Burin, Maira Graeff, Leistner-Segal, Sandra, Ashton-Prolla, Patrícia, Giugliani, Roberto

المصدر: Genetics and Molecular Biology. January 2019 42(1)

مصطلحات موضوعية: Information services, Medical Genetics, diagnostic networks, rare diseases, reference centers

الوصف: Brazil is a country of continental dimensions and most genetic services are concentrated in the Southeast and South, including the Medical Genetics Service of the Hospital de Clínicas de Porto Alegre (MGS/HCPA). As many areas on the country do not have adequate medical genetics support, networks were designed to extend the service of the MGS/HCPA reference center. This paper presents the information and diagnosis networks that have their headquarters at MGS/HCPA: SIAT (National Information System on Teratogenic Agents), SIEM (Information Service on Inborn Errors of Metabolism), Alô Genética (Hello Genetics - Medical Genetics Information Service for Primary Health Care Professionals); Rede MPS Brasil (MPS-Mucopolysaccharidosis Brazil Network); Rede EIM Brasil (IEM-Inborn Errors of Metabolism Brazil Network), Rede NPC Brasil (Niemann-Pick C - NPC Brazil Network), Rede DLD Brasil (LSD-Lysosomal Storage Disorders Brazil Network), Rede DXB (MSUD-Maple Syrup Urine Disease Network), RedeBRIM (Brazilian Network of Reference and Information in Microdeletion Syndromes Project), Rede Neurogenética (Neurogenetics Network), and Rede Brasileira de Câncer Hereditário (Brazilian Hereditary Cancer Network). These tools are very useful to provide access to a qualified information and/or diagnostic service for specialized and non-specialized health services, bypassing difficulties that preclude patients to access reference centers.

وصف الملف: text/html

الوصول الحر: http://old.scielo.br/scielo.php?script=sci_arttext&pid=S1415-47572019000200155Test

المؤلفون: Valentim, Ana Isa Ribeiro

المساهمون: RUN

مصطلحات موضوعية: cancro colo-rectal, centros de referência, volume, mortalidade intrahospitalar, complicações, demora média, colorectal cancer, reference centers, in-hospital mortality, complications, length of stay

الوصف: Trabalho Final do Curso de Especialização em Administração Hospitalar

الوصف (مترجم): RESUMO - Enquadramento: Nos países da OCDE, o cancro colo-rectal é o terceiro tipo de cancro mais diagnosticado nos homens e o segundo mais diagnosticado nas mulheres. Em simultâneo é o segundo cancro que mais mortes provoca nos homens e o terceiro nas mulheres, sendo considerado um importante indicador de saúde publica. Por este motivo em 2016, o Ministério da Saúde nomeou um conjunto de centros de referência para o tratamento desta doença. O presente trabalho teve como principal objetivo comparar os resultados alcançados no tratamento cirúrgico de doentes com cancro colo-rectal, entre os centros de referência e as restantes unidades hospitalares. Metodologia: Foi realizado um estudo observacional através da utilização da base de dados de morbilidade hospitalar, que incluiu os anos 2013, 2014 e 2015. Foram incluídos os episódios cirúrgicos, de utentes com idade superior ou igual a 18 anos, cujo diagnóstico principal correspondia a cancro colo-rectal. Após aplicação dos critérios de exclusão foram analisados 19,396 episódios, num total de 44 unidades hospitalares. Foram aplicados dois modelos de ajustamento pelo risco: um primeiro de regressão logística e um modelo linear generalizado com estrutura de correlação, que entrou em linha de conta com o nível do hospital. Resultados: O nosso estudo concluiu que em doentes operados por cancro colo-rectal, não se verificam diferenças estatisticamente significativas, entre os centros de referência e as restantes unidades hospitalares, quanto à mortalidade intra-hospitalar (p>0,05; OR=1,020; IC95%: 0,731-1,423), complicações (p>0,05; OR=0,875; IC 95%: 0,679-1,128) e dias de internamento (p>0.05; OR=0,904; IC 95%: 0,447-1,828). Conclusões: Os resultados do nosso estudo sugerem que a diferenciação dos centros de referência, deverá depender de indicadores de processo e resultado. A melhoria da qualidade e do desempenho dos centros de referência, dependerá do estabelecimento de objetivos, em linha com as normas internacionais e de processos de monitorização através de sistemas de informação em rede.
Background: In the OECD countries, colorectal cancer is the third most diagnosed type of cancer in men and the second most diagnosed in women. At the same time, it is the second cancer that causes more deaths in men and the third in women being considered an important indicator of public health. For this reason, in 2016, the portuguese government appointed a group of hospital reference centers for the treatment of this disease. The main objective of this study was to compare the results obtained in the surgical treatment of patients with colorectal cancer, between the reference centers and the remaining hospital units. Methodology: An observational study was carried out using the hospital morbidity database, wich included the years 2013, 2014 and 2015. We included the surgical episodes of patients 18years of age or older, wich main diagnosis was colorectal cancer. After applying the exclusion criteria, 19.936 episodes where analyzed, in a total of 44 hospital units. Two models of risk adjustment were applied: a first, of logistic regression and a generalized linear model with correlation structure wich took into account the level of the hospital Results: Our study found that, in patients undergoing to surgery for colorectal cancer, there were no statistically significant differences between reference centers and other hospitals regarding in - hospital mortality (p>0,05; OR=1,020; IC95%: 0,731-1,423); complications (p>0,05; OR=0,875; IC 95%: 0,679-1,128) and length of stay (p>0.05; OR=0,904; IC 95%: 0,447-1,828). Conclusions: The results of our study suggest that the differentiation of reference centers should depend on process and outcome indicators. Improving the quality and performance of reference centers will depend on setting of objectives, in line with international standards and monitoring processes through network information systems

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الإتاحة: http://hdl.handle.net/10362/75818Test