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Caracterización de las prácticas en la atención de enfermedades raras : revisión sistemática de la literatura

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dc.contributor.advisorPinzón Espitia, Olga Lucía
dc.creatorRodriguez Martinez, Karen Juliettespa
dc.creatorPareja Nausa, Diana Marcela
dc.creatorVigoya Aya, Mabely Marelby
dc.creator.degreeMagíster en Administración en Saludspa
dc.creator.degreetypeFull timespa
dc.date.accessioned2019-09-19T16:57:40Z
dc.date.available2019-09-19T16:57:40Z
dc.date.created2019-09-16
dc.descriptionIntroducción: Las enfermedades raras, aunque afectan un bajo porcentaje de la población, se constituyen en una prioridad para la salud de un País, debido a la falta de una atención integral en los servicios de salud, altos costos, rechazo social, escasos profesionales idóneos y capacitados para el manejo de estas enfermedades e inequidades y desigualdades sociales. Objetivo: Identificar las mejores prácticas y acciones en atención en salud a partir de una revisión sistemática de la literatura. Métodos: Se realizó una revisión sistemática de la literatura, bajo la metodología PRISMA, en las bases de datos PUBMED, COCHRANE DATABASE – WILEY, LILACS, EMBASE, OVID y literatura gris publicadas entre 2014 y 2019 en inglés y español. Posteriormente, se realizó la evaluación de calidad de las revisiones sistemáticas mediante la aplicación de la matriz AMSTAR, y para la calificación de estudios de cohorte la herramienta del Scottish Intercollegiate Guidelines Network (SIGN). Resultados: Se identificó un total de 1900 artículos, de los cuales se seleccionaron 16 revisiones sistemáticas, 7 estudios de cohorte y 172 revisiones panorámicas por criterios de inclusión para un total de 195 artículos de los cuales solo 16 fueron considerados de alta calidad. En los resultados se encuentra como reto incorporar un sistema de atención de enfermedades raras que brinde una cobertura óptima para esta población. Dentro de las limitantes observadas está la identificación, diagnóstico y seguimiento de la enfermedad, la falta de sistemas de clasificación y registro, la dificultad para el acceso a medicamentos, el desarrollo de políticas y la poca investigación y evidencia científica como una causa directa. Sin embargo, se plantea la importancia de desarrollar políticas que permitan crear alianzas entre los gobiernos, compañías farmacéuticas y las organizaciones que incentiven a un manejo integral a estos pacientes. Conclusiones: Se debe establecer una base de datos sólida y sistemas de información basado en los avances tecnológicos que promuevan la investigación y el desarrollo de medicamentos. Así como la planificación, seguimiento e implementación de políticas y estrategias que garanticen el acceso oportuno a los servicios de salud.spa
dc.description.abstractIntroduction: Rare diseases, although they affect a low population percentage, are a priority for the country's healthcare system, on account of lack of an entirely comprehensive customer care scheme, high costs, social rejection, absence of skilled professionals, trained to handle this kind of diseases and social inequity. Objectives: Identify the best practices and healthcare actions based on a systematic literature review. Methods: A systematic review was conducted under the PRISMA methodology in PUBMED, COCHRANE DATABASE- WILEY, LILACS, EMBASE, OVID databases and grey literature published between 2014 and 2019 including records in English and Spanish. Subsequently, the quality of systematic reviews was carried out using the AMSTAR matrix, and for the qualification of cohort studies Scottish Intercollegiate Guidelines Network (SIGN) tool was applied. Results: A total of 1900 articles were identified, of which 16 systematic reviews, 7 cohort studies and 172 panoramic reviews were selected by inclusion criteria for a total of 195 articles, however, only 16 were considered as high-quality content. The results emerged the need for a healthcare system specialized in rare diseases, that provides the population with optimum coverage. Among the exposed limitations, the more significant ones are disease diagnosis, treatment and monitoring, lack of classification and recording systems, the constraint of medication access, policies development, limited investigation and scientific proof as direct cause. However, the importance of development of new laws which allow alliances between governments, pharmaceutical companies and healthcare organizations that prioritize the comprehensive care of these patients must be noted. Conclusions: a solid database and information systems based on technological improvements that encourage drug development and investigation have to be established. Likewise, planning, follow up and enforcement of policies and strategies that ensure prompt access to healthcare services.spa
dc.description.sponsorshipPinzón Espitia, Olga Luciaspa
dc.description.sponsorshipGonzales Rodriguez, Javier Leonardospa
dc.description.sponsorshipRodriguez Martinez, Karen Juliettespa
dc.description.sponsorshipPareja Nausa, Diana Marcelaspa
dc.description.sponsorshipVigoya Aya, Mabely Marelbyspa
dc.format.mimetypeapplication/pdf
dc.identifier.doihttps://doi.org/10.48713/10336_20297
dc.identifier.urihttps://repository.urosario.edu.co/handle/10336/20297
dc.language.isospaspa
dc.publisherUniversidad del Rosariospa
dc.publisher.departmentFacultad de administraciónspa
dc.publisher.programMaestría en Administración en Saludspa
dc.rightsAtribución-NoComercial 2.5 Colombiaspa
dc.rightsAtribución-NoComercial-SinDerivadas 2.5 Colombiaspa
dc.rights.accesRightsinfo:eu-repo/semantics/openAccess
dc.rights.accesoAbierto (Texto Completo)spa
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dc.source.instnameinstname:Universidad del Rosariospa
dc.source.reponamereponame:Repositorio Institucional EdocURspa
dc.subjectEnfermedades rarasspa
dc.subjectComplicacionesspa
dc.subjectTerapiasspa
dc.subjectAdministraciónspa
dc.subjectEconomíaspa
dc.subject.ddcEnfermedadesspa
dc.subject.keywordRare diseasesspa
dc.subject.keywordComplicationsspa
dc.subject.keywordTherapiesspa
dc.subject.keywordAdministrationspa
dc.subject.keywordEconomyspa
dc.subject.lembEnfermedades rarasspa
dc.subject.lembSalud públicaspa
dc.subject.lembPolítica de saludspa
dc.titleCaracterización de las prácticas en la atención de enfermedades raras : revisión sistemática de la literaturaspa
dc.title.TranslatedTitleCharacterization of practices in the care of rare diseases : a systematic revieweng
dc.typemasterThesiseng
dc.type.documentArtículospa
dc.type.hasVersioninfo:eu-repo/semantics/acceptedVersion
dc.type.spaTesis de maestríaspa
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