<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>1688-0390</journal-id>
<journal-title><![CDATA[Revista Médica del Uruguay]]></journal-title>
<abbrev-journal-title><![CDATA[Rev. Méd. Urug.]]></abbrev-journal-title>
<issn>1688-0390</issn>
<publisher>
<publisher-name><![CDATA[Sindicato Médico del Uruguay]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S1688-03902017000100046</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Directivas de adecuación del esfuerzo terapéutico en niños. Experiencia de la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (2009-2015)]]></article-title>
<article-title xml:lang="en"><![CDATA[Directives on the adequacy of therapeutic effort in children. Experience at the Peadiatric Palliative Care Unit of the Pereira Rossell Hospital Centre (2009-2015)]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Pereira]]></surname>
<given-names><![CDATA[Inés]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Koziol]]></surname>
<given-names><![CDATA[Silvia]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Mauvezin]]></surname>
<given-names><![CDATA[Joaquín]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Notejane]]></surname>
<given-names><![CDATA[Martín]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Bernadá]]></surname>
<given-names><![CDATA[Mercedes]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Pediatría  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
</aff>
<aff id="Af2">
<institution><![CDATA[,Universidad de la República Facultad de Medicina Departamento de Pediatría y Especialidades]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Universidad de la República Facultad de Medicina Departamento de Pediatría y Especialidades]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<aff id="Af4">
<institution><![CDATA[,Universidad de la República Facultad de Medicina Departamento de Pediatría y Especialidades. Unidad de Cuidados Paliativos Pediátricos]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<aff id="Af5">
<institution><![CDATA[,Universidad de la República Facultad de Medicina Departamento de Pediatría y Especialidades. Coordinadora de la Unidad de Cuidados Paliativos Pediátricos]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>03</month>
<year>2017</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>03</month>
<year>2017</year>
</pub-date>
<volume>33</volume>
<numero>1</numero>
<fpage>46</fpage>
<lpage>71</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://www.scielo.edu.uy/scielo.php?script=sci_arttext&amp;pid=S1688-03902017000100046&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.edu.uy/scielo.php?script=sci_abstract&amp;pid=S1688-03902017000100046&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.edu.uy/scielo.php?script=sci_pdf&amp;pid=S1688-03902017000100046&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[Resumen  Introducción:  en algunos pacientes las directivas de adecuación del esfuerzo terapéutico (DAET) constituyen una herramienta para alinear el cuidado médico a los objetivos del paciente y su familia.  Objetivo:  describir las características de los niños asistidos por una unidad de cuidados paliativos pediátricos (UCPP) con DAET y el nivel de respeto de las mismas en los niños fallecidos.  Material y método:  estudio descriptivo, retrospectivo. Período: 1/1/2009-31/12/2015. Población: niños asistidos por la UCPP. Variables, de los niños con DAET: edad, patología, participantes en la toma de decisiones, forma de registro, medidas a realizar y no realizar, tiempo entre captación por UCPP/DAET, fallecimiento, tiempo entre DAET/fallecimiento, lugar de fallecimiento, respeto de las DAET.  Resultados:  tenían DAET 11,8% (73/618) de los pacientes; mediana edad: 3,8 años; 75,3% presentaba afectación neurológica severa. Participantes en el proceso de DAET: equipo de salud y cuidador principal: 94,5%. Registro en documento específico: 60,3%. Las DAET incluyeron realizar: analgesia y cuidados de confort: 100%, ingreso a cuidados moderados: 86,3% y no realizar: reanimación cardiopulmonar: 100%, ingreso a terapia intensiva: 86,3%, asistencia ventilatoria mecánica 83,5%. Tiempo entre captación UCPP/DAET: mediana: 13 meses. Falleció 53,4% (39/73), en el hospital 76,9%. Tiempo entre DAET/fallecimiento, mediana: 7 meses. Se respetaron las DAET en 97,4%.  Discusión y conclusiones:  de los niños asistidos por la UCPP, 11,8% tenía DAET. En su mayoría el proceso fue compartido entre profesionales y cuidadores. Se constató un aumento progresivo de DAET en documentos de registro específico. En casi la totalidad de los niños fallecidos se respetó las DAET.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract  Introduction:  in certain patients, &#8220;directives on the adequacy of therapeutic effort&#8221; (DAET) known as advanced care planning are important tools to align medical care to patient&#8217;s and family&#8217;s objectives of care.  Purpose: to describe characteristics of patients assisted by a paediatric palliative care unit (PPCU) with DAET and the degree in which they were respected in children who died.  Methods: descriptive, retrospective study. Period: 1/January/2009- 31/December/2015. Population: children assisted by the UCPP with DAET. Variables: age, pathology, prosthesis carried, primary caregiver, participants in decision-making process, form of registration, measures &#8220;TO PERFORM&#8221; and &#8220;NOT TO PERFORM&#8221;, time between recruitment by PPCU/DAET, death, time between DAET/death, place of death, DAET accomplished.  Results: DAET was found in 11.8% (73/618) of patients; median age: 3.8 years old; 75.3% had severe neurological impairment; 84.9% carried at least one prosthesis; primary caregiver: mother 72.6%. Participants in decision-making process: healthcare team and primary caregiver 94.5%. Registration in specific document: 60.3%. DAET included: &#8220;TO PERFORM&#8221;: analgesia and comfort care: 100%, admission to moderate care: 86.3% and &#8220;NOT TO PERFORM&#8221;: cardiopulmonary resuscitation: 100%, admission to intensive care: 86.3%, mechanical ventilator assistance 83.5%. Time between recruitment by PPCU/DAET: median: 13 months. 53.4% (39/73) died, in the hospital 76.9%. Time between DAET/death, median: 7 months. DAET were followed in 97.4%.  Discussion and conclusions: 11.8% of children assisted by PPCU had DAET. Decision-making was shared between health providers and caregivers in most cases. DAET were respected in almost all children who had them and died.]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo:  Introdução:  para alguns pacientes as diretivas de adequação do esforço terapêutico (DAET) são uma ferramenta para compatibilizar a atenção médica e os objetivos do paciente de sua família. Objetivo: descrever as características das crianças atendidas por uma unidade de cuidados paliativos pediátricos (UCPP) com DAET e o nível de respeito das mesmas nas crianças que faleceram.  Material y método:  estudo descritivo, retrospectivo. Período: 1/1/2009-31/12/2015. População: crianças atendidas pela UCPP. Variáveis: das crianças com DAET: idade, patologia, participantes na toma de decisões, forma de registro, medidas a realizar e a não realizar, tempo entre captação por UCPP/DAET, falecimento, tempo entre DAET/falecimento, lugar de falecimento, respeito as DAET.  Resultados:  11,8% (73/618) dos pacientes tinham DAET; a mediana de idade foi: 3,8 anos; 75,3% apresentava afetação neurológica severa. Participantes do processo de DAET: em 94,5% dos casos - equipe de saúde e cuidador principal. Registro en documento específico: 60,3%. As DAET incluíam a realização de: analgesia e cuidados de conforto: 100%, admissão a cuidados moderados: 86,3% e a não realização de: reanimação cardiopulmonar: 100%, admissão a terapia intensiva: 86,3%, assistência ventilatoria mecânica 83,5%. Tempo entre captação UCPP/DAET: mediana: 13 meses. 53,4% (39/73) faleceu sendo 76,9% no hospital. Tempo entre DAET/falecimento, mediana: 7 meses. As DAET foram respeitadas em 97,4%.  Discussão e conclusões:  11,8% das crianças atendidas pela UCPP tinha DAET. Na maioria dos casos o processo foi compartilhado entre profissionais e cuidadores. Um aumento progressivo de DAET nos documentos de registro específico foi observado. AS DAET foram respeitadas em praticamente todos os casos.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[Cuidados paliativos pediátricos]]></kwd>
<kwd lng="es"><![CDATA[Toma de decisiones]]></kwd>
<kwd lng="es"><![CDATA[Planificación anticipada de atención]]></kwd>
<kwd lng="es"><![CDATA[Adecuación esfuerzo terapéutico.]]></kwd>
<kwd lng="en"><![CDATA[Pediatric palliative care]]></kwd>
<kwd lng="en"><![CDATA[Decision making]]></kwd>
<kwd lng="en"><![CDATA[Advance care planning]]></kwd>
<kwd lng="en"><![CDATA[Adequacy of therapeutic effort.]]></kwd>
<kwd lng="pt"><![CDATA[Cuidados paliativos pediátricos]]></kwd>
<kwd lng="pt"><![CDATA[Tomada de decisões]]></kwd>
<kwd lng="pt"><![CDATA[Planejamento antecipado de cuidados]]></kwd>
<kwd lng="pt"><![CDATA[Adequação do esforço terapéutico.]]></kwd>
</kwd-group>
</article-meta>
</front><back>
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