<?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>0864-0289</journal-id>
<journal-title><![CDATA[Revista Cubana de Hematología, Inmunología y Hemoterapia]]></journal-title>
<abbrev-journal-title><![CDATA[Rev Cubana Hematol Inmunol Hemoter]]></abbrev-journal-title>
<issn>0864-0289</issn>
<publisher>
<publisher-name><![CDATA[Centro Nacional de Información de Ciencias MédicasEditorial Ciencias Médicas]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0864-02892020000200007</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Calidad de vida relacionada con la salud en niños hemofílicos: construcción y validación de un cuestionario]]></article-title>
<article-title xml:lang="en"><![CDATA[Health-related quality of life in hemophilic children: construction and validation of a questionnaire]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Martínez Triana]]></surname>
<given-names><![CDATA[Raúl]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[García Hernández]]></surname>
<given-names><![CDATA[Ailyn]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Zaneti Díaz]]></surname>
<given-names><![CDATA[Patricia]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Machado Almeida]]></surname>
<given-names><![CDATA[Teresita]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Castillo González]]></surname>
<given-names><![CDATA[Dunia]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Instituto de Hematología e Inmunología  ]]></institution>
<addr-line><![CDATA[La Habana ]]></addr-line>
<country>Cuba</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2020</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2020</year>
</pub-date>
<volume>36</volume>
<numero>2</numero>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.sld.cu/scielo.php?script=sci_arttext&amp;pid=S0864-02892020000200007&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.sld.cu/scielo.php?script=sci_abstract&amp;pid=S0864-02892020000200007&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.sld.cu/scielo.php?script=sci_pdf&amp;pid=S0864-02892020000200007&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[RESUMEN  Introducción: La hemofilia es una enfermedad hemorrágica crónica y hereditaria que influye desfavorablemente en el desarrollo biopsicosocial. El estudio periódico de la calidad de vida relacionada con la salud es un indicador útil en los pacientes pediátricos que padecen este trastorno.  Objetivo:  Desarrollar y validar un cuestionario específico breve para el monitoreo de la calidad de vida en niños hemofílicos.  Métodos:  Se trabajó en tres fases: creación de preguntas, estudio piloto y estudio de campo. La versión preliminar estuvo formada por 24 preguntas tipo Likert adecuadas para niños y para padres. De un primer análisis se obtuvo una segunda versión con 22 preguntas la cual se aplicó a 38 pacientes, con una edad promedio de 11,7 años.  Resultados:  Se determinó la confiabilidad por la consistencia interna de cada modelo, según el índice alfa de Cronbach, en niños (área física= 0,81, área emocional= 0,59, área psicosocial= 0,71) y en padres (área física= 0,88, área emocional= 0,87 y área psicosocial= 0,90). Se obtuvo un fuerte criterio de validez convergente con el cuestionario genérico Inventario de calidad de vida pediátrica (PedsQL) en todas las subescalas, tanto de los niños como de los padres (p&lt; 0,05), también entre los resultados de niños y padres (p&lt; 0,05). Se alcanzó validez discriminante en los padres para la variable gravedad de la enfermedad y para ambos en cuanto a las limitaciones ortopédicas (p&lt; 0,05).  Conclusiones: El cuestionario mostró cualidades psicométricas satisfactorias y diferenció acertadamente las afectaciones físicas, emocionales y de ajuste social. La versión obtenida se considera como la definitiva.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[ABSTRACT  Introduction:  Hemophilia is a chronic and hereditary hemorrhagic disease that adversely influences biopsychosocial development. Periodic study of health-related quality of life is a useful indicator in pediatric patients suffering from this disorder.  Objective:  To develop and validate a short specific questionnaire for monitoring the quality of life in hemophiliac children.  Methods:  We worked in three stages: creation of questions, pilot study and field study. The preliminary version consisted of 24 Likert questions suitable for children and parents. From a first analysis, a second version with 22 questions was obtained, which was applied to 38 patients, with an average age of 11.7 years.  Results:  Reliability was determined by the internal consistency of each model, according to Cronbach's alpha index, in children (physical area: 0.81; emotional area: 0.59; and psychosocial area: 0.71) and in parents (area physical: 0.88; emotional area: 0.87; and psychosocial area: 0.90). A strong convergent validity criterion was obtained with the generic Pediatric Quality of Life Inventory (PedsQL) questionnaire in all subscales, for both children and parents (p&lt;0.05); also between the results of children and parents (p&lt;0.05). Discriminant validity was achieved in parents, according to the variable severity of the disease; and for both in terms of orthopedic limitations (p&lt;0.05).  Conclusions:  The questionnaire showed satisfactory psychometric qualities and correctly differentiated physical, emotional and social adjustment affections. The version obtained is considered the ultimate one.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[hemofilia]]></kwd>
<kwd lng="es"><![CDATA[calidad de vida relacionada con la salud]]></kwd>
<kwd lng="es"><![CDATA[cuestionario]]></kwd>
<kwd lng="en"><![CDATA[hemophilia]]></kwd>
<kwd lng="en"><![CDATA[health-related quality of life]]></kwd>
<kwd lng="en"><![CDATA[questionnaire]]></kwd>
</kwd-group>
</article-meta>
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