Statistics

 array:25 [
  "pii" => "S2341287918302035"
  "issn" => "23412879"
  "doi" => "10.1016/j.anpede.2018.03.005"
  "estado" => "S300"
  "fechaPublicacion" => "2019-01-01"
  "aid" => "2406"
  "copyright" => "Asociación Española de Pediatría"
  "copyrightAnyo" => "2017"
  "documento" => "article"
  "crossmark" => 1
  "licencia" => "http://creativecommons.org/licenses/by-nc-nd/4.0/"
  "subdocumento" => "fla"
  "cita" => "An Pediatr (Barc). 2019;90:42-50"
  "abierto" => array:3 [
    "ES" => true
    "ES2" => true
    "LATM" => true
  ]
  "gratuito" => true
  "lecturas" => array:2 [
    "total" => 1152
    "formatos" => array:3 [
      "EPUB" => 108
      "HTML" => 796
      "PDF" => 248
    ]
  ]
  "Traduccion" => array:1 [
    "es" => array:20 [
      "pii" => "S169540331830119X"
      "issn" => "16954033"
      "doi" => "10.1016/j.anpedi.2018.03.003"
      "estado" => "S300"
      "fechaPublicacion" => "2019-01-01"
      "aid" => "2406"
      "copyright" => "Asociación Española de Pediatría"
      "documento" => "article"
      "crossmark" => 1
      "licencia" => "http://creativecommons.org/licenses/by-nc-nd/4.0/"
      "subdocumento" => "fla"
      "cita" => "An Pediatr (Barc). 2019;90:42-50"
      "abierto" => array:3 [
        "ES" => true
        "ES2" => true
        "LATM" => true
      ]
      "gratuito" => true
      "lecturas" => array:2 [
        "total" => 3805
        "formatos" => array:3 [
          "EPUB" => 165
          "HTML" => 2960
          "PDF" => 680
        ]
      ]
      "es" => array:13 [
        "idiomaDefecto" => true
        "cabecera" => "<span class="elsevierStyleTextfn">ORIGINAL</span>"
        "titulo" => "Necesidades sanitarias y socioeducativas de ni&#241;os con enfermedades raras de tipo metab&#243;lico y sus familias&#58; estudio cualitativo en un hospital de tercer nivel"
        "tienePdf" => "es"
        "tieneTextoCompleto" => "es"
        "tieneResumen" => array:2 [
          0 => "es"
          1 => "en"
        ]
        "paginas" => array:1 [
          0 => array:2 [
            "paginaInicial" => "42"
            "paginaFinal" => "50"
          ]
        ]
        "titulosAlternativos" => array:1 [
          "en" => array:1 [
            "titulo" => "Health and socio-educational needs of the families and children with rare metabolic diseases&#58; Qualitative study in a tertiary hospital"
          ]
        ]
        "contieneResumen" => array:2 [
          "es" => true
          "en" => true
        ]
        "contieneTextoCompleto" => array:1 [
          "es" => true
        ]
        "contienePdf" => array:1 [
          "es" => true
        ]
        "resumenGrafico" => array:2 [
          "original" => 0
          "multimedia" => array:7 [
            "identificador" => "fig0010"
            "etiqueta" => "Figura 2"
            "tipo" => "MULTIMEDIAFIGURA"
            "mostrarFloat" => true
            "mostrarDisplay" => false
            "figura" => array:1 [
              0 => array:4 [
                "imagen" => "gr2.jpeg"
                "Alto" => 989
                "Ancho" => 2111
                "Tamanyo" => 112910
              ]
            ]
            "descripcion" => array:1 [
              "es" => "<p id="spar0050" class="elsevierStyleSimplePara elsevierViewall">Porcentaje de valoraci&#243;n negativa de los familiares de pacientes pedi&#225;tricos con errores innatos del metabolismo encuestados sobre la cobertura de los servicios de atenci&#243;n sanitaria &#40;N<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>47&#41;&#46;</p>"
            ]
          ]
        ]
        "autores" => array:1 [
          0 => array:2 [
            "autoresLista" => "Eva Mar&#237;a Tejada-Ortigosa, Katherine Flores-Rojas, Laura Moreno-Quintana, Mar&#237;a Carmen Mu&#241;oz-Villanueva, Juan Luis P&#233;rez-Navero, Mercedes Gil-Campos"
            "autores" => array:6 [
              0 => array:2 [
                "nombre" => "Eva Mar&#237;a"
                "apellidos" => "Tejada-Ortigosa"
              ]
              1 => array:2 [
                "nombre" => "Katherine"
                "apellidos" => "Flores-Rojas"
              ]
              2 => array:2 [
                "nombre" => "Laura"
                "apellidos" => "Moreno-Quintana"
              ]
              3 => array:2 [
                "nombre" => "Mar&#237;a Carmen"
                "apellidos" => "Mu&#241;oz-Villanueva"
              ]
              4 => array:2 [
                "nombre" => "Juan Luis"
                "apellidos" => "P&#233;rez-Navero"
              ]
              5 => array:2 [
                "nombre" => "Mercedes"
                "apellidos" => "Gil-Campos"
              ]
            ]
          ]
        ]
      ]
      "idiomaDefecto" => "es"
      "Traduccion" => array:1 [
        "en" => array:9 [
          "pii" => "S2341287918302035"
          "doi" => "10.1016/j.anpede.2018.03.005"
          "estado" => "S300"
          "subdocumento" => ""
          "abierto" => array:3 [
            "ES" => true
            "ES2" => true
            "LATM" => true
          ]
          "gratuito" => true
          "lecturas" => array:1 [
            "total" => 0
          ]
          "idiomaDefecto" => "en"
          "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S2341287918302035?idApp=UINPBA00005H"
        ]
      ]
      "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S169540331830119X?idApp=UINPBA00005H"
      "url" => "/16954033/0000009000000001/v1_201901020605/S169540331830119X/v1_201901020605/es/main.assets"
    ]
  ]
  "itemSiguiente" => array:20 [
    "pii" => "S2341287918302047"
    "issn" => "23412879"
    "doi" => "10.1016/j.anpede.2018.01.016"
    "estado" => "S300"
    "fechaPublicacion" => "2019-01-01"
    "aid" => "2381"
    "copyright" => "Asociaci&#243;n Espa&#241;ola de Pediatr&#237;a"
    "documento" => "simple-article"
    "crossmark" => 1
    "licencia" => "http://creativecommons.org/licenses/by-nc-nd/4.0/"
    "subdocumento" => "crp"
    "cita" => "An Pediatr &#40;Barc&#41;. 2019;90:51-2"
    "abierto" => array:3 [
      "ES" => true
      "ES2" => true
      "LATM" => true
    ]
    "gratuito" => true
    "lecturas" => array:2 [
      "total" => 1523
      "formatos" => array:3 [
        "EPUB" => 113
        "HTML" => 1121
        "PDF" => 289
      ]
    ]
    "en" => array:11 [
      "idiomaDefecto" => true
      "cabecera" => "<span class="elsevierStyleTextfn">Scientific Letter</span>"
      "titulo" => "<span class="elsevierStyleItalic">Arthroderma benhamiae</span> in patients with guinea pigs"
      "tienePdf" => "en"
      "tieneTextoCompleto" => "en"
      "paginas" => array:1 [
        0 => array:2 [
          "paginaInicial" => "51"
          "paginaFinal" => "52"
        ]
      ]
      "titulosAlternativos" => array:1 [
        "es" => array:1 [
          "titulo" => "<span class="elsevierStyleItalic">Arthroderma benhamiae</span> en pacientes con cobayas"
        ]
      ]
      "contieneTextoCompleto" => array:1 [
        "en" => true
      ]
      "contienePdf" => array:1 [
        "en" => true
      ]
      "resumenGrafico" => array:2 [
        "original" => 0
        "multimedia" => array:7 [
          "identificador" => "fig0005"
          "etiqueta" => "Figure 1"
          "tipo" => "MULTIMEDIAFIGURA"
          "mostrarFloat" => true
          "mostrarDisplay" => false
          "figura" => array:1 [
            0 => array:4 [
              "imagen" => "gr1.jpeg"
              "Alto" => 1200
              "Ancho" => 800
              "Tamanyo" => 151456
            ]
          ]
          "descripcion" => array:1 [
            "en" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Kerion celsi&#46;</p>"
          ]
        ]
      ]
      "autores" => array:1 [
        0 => array:2 [
          "autoresLista" => "Tania Mart&#237;n-Pe&#241;aranda, Jos&#233; Miguel Lera Imbuluzqueta, Miriam Alkorta Gurrutxaga"
          "autores" => array:3 [
            0 => array:2 [
              "nombre" => "Tania"
              "apellidos" => "Mart&#237;n-Pe&#241;aranda"
            ]
            1 => array:2 [
              "nombre" => "Jos&#233; Miguel"
              "apellidos" => "Lera Imbuluzqueta"
            ]
            2 => array:2 [
              "nombre" => "Miriam"
              "apellidos" => "Alkorta Gurrutxaga"
            ]
          ]
        ]
      ]
    ]
    "idiomaDefecto" => "en"
    "Traduccion" => array:1 [
      "es" => array:9 [
        "pii" => "S1695403318300341"
        "doi" => "10.1016/j.anpedi.2018.01.015"
        "estado" => "S300"
        "subdocumento" => ""
        "abierto" => array:3 [
          "ES" => true
          "ES2" => true
          "LATM" => true
        ]
        "gratuito" => true
        "lecturas" => array:1 [
          "total" => 0
        ]
        "idiomaDefecto" => "es"
        "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S1695403318300341?idApp=UINPBA00005H"
      ]
    ]
    "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S2341287918302047?idApp=UINPBA00005H"
    "url" => "/23412879/0000009000000001/v1_201901020610/S2341287918302047/v1_201901020610/en/main.assets"
  ]
  "itemAnterior" => array:20 [
    "pii" => "S2341287918302175"
    "issn" => "23412879"
    "doi" => "10.1016/j.anpede.2018.03.008"
    "estado" => "S300"
    "fechaPublicacion" => "2019-01-01"
    "aid" => "2403"
    "copyright" => "Asociaci&#243;n Espa&#241;ola de Pediatr&#237;a"
    "documento" => "article"
    "crossmark" => 1
    "licencia" => "http://creativecommons.org/licenses/by-nc-nd/4.0/"
    "subdocumento" => "fla"
    "cita" => "An Pediatr &#40;Barc&#41;. 2019;90:32-41"
    "abierto" => array:3 [
      "ES" => true
      "ES2" => true
      "LATM" => true
    ]
    "gratuito" => true
    "lecturas" => array:2 [
      "total" => 1142
      "formatos" => array:3 [
        "EPUB" => 100
        "HTML" => 698
        "PDF" => 344
      ]
    ]
    "en" => array:12 [
      "idiomaDefecto" => true
      "cabecera" => "<span class="elsevierStyleTextfn">Original Article</span>"
      "titulo" => "Efficacy&#44; safety and satisfaction of sedation-analgesia in Spanish emergency departments"
      "tienePdf" => "en"
      "tieneTextoCompleto" => "en"
      "tieneResumen" => array:2 [
        0 => "en"
        1 => "es"
      ]
      "paginas" => array:1 [
        0 => array:2 [
          "paginaInicial" => "32"
          "paginaFinal" => "41"
        ]
      ]
      "titulosAlternativos" => array:1 [
        "es" => array:1 [
          "titulo" => "Eficacia&#44; seguridad y satisfacci&#243;n de los procedimientos de sedoanalgesia en las urgencias espa&#241;olas"
        ]
      ]
      "contieneResumen" => array:2 [
        "en" => true
        "es" => true
      ]
      "contieneTextoCompleto" => array:1 [
        "en" => true
      ]
      "contienePdf" => array:1 [
        "en" => true
      ]
      "autores" => array:2 [
        0 => array:2 [
          "autoresLista" => "Concepci&#243;n M&#237;guez Navarro, Niki Oikonomopoulou, Ar&#237;stides Rivas Garc&#237;a, Andrea Mora Cap&#237;n, Gloria Guerrero M&#225;rquez"
          "autores" => array:6 [
            0 => array:2 [
              "nombre" => "Concepci&#243;n"
              "apellidos" => "M&#237;guez Navarro"
            ]
            1 => array:2 [
              "nombre" => "Niki"
              "apellidos" => "Oikonomopoulou"
            ]
            2 => array:2 [
              "nombre" => "Ar&#237;stides"
              "apellidos" => "Rivas Garc&#237;a"
            ]
            3 => array:2 [
              "nombre" => "Andrea"
              "apellidos" => "Mora Cap&#237;n"
            ]
            4 => array:2 [
              "nombre" => "Gloria"
              "apellidos" => "Guerrero M&#225;rquez"
            ]
            5 => array:1 [
              "colaborador" => "on behalf of the Analgesia and Sedation Group of the Spanish Society of Pediatric Emergencies"
            ]
          ]
        ]
        1 => array:2 [
          "autoresLista" => "Concepci&#243;n M&#237;guez Navarro, Niki Oikonomopoulou, Ar&#237;stides Rivas Garc&#237;a, Andrea Mora Cap&#237;n, Gloria Guerrero M&#225;rquez, Ana Isabel Fern&#225;ndez Lorente, Pilar Storch de Gracia Calvo, Eva Benito Ruiz, Elena Sancho Gracia, Olga Serrano Ayestar&#225;n, Cecilio Palomino Mu&#241;oz, Cristina Cordero Castro, Sof&#237;a Mesa Garc&#237;a, Cristina Mu&#241;oz L&#243;pez, Nuria Clerigu&#233; Arrieta, Jorge &#193;lvarez Garc&#237;a, Isabel Cubero, Jos&#233; Luis Fern&#225;ndez Arribas, Alberto Barasoain Mill&#225;n, Juan Alonso Cozar Olmo, Jos&#233; Luis Cuevas Cervera, Carlos Garc&#237;a Vao Bel, M&#46; Jos&#233; Carbonero Cel&#237;s, M&#46; Jos&#233; Carpio Linde, M&#46; Teresa Alonso Salas"
          "autores" => array:25 [
            0 => array:2 [
              "nombre" => "Concepci&#243;n"
              "apellidos" => "M&#237;guez Navarro"
            ]
            1 => array:2 [
              "nombre" => "Niki"
              "apellidos" => "Oikonomopoulou"
            ]
            2 => array:2 [
              "nombre" => "Ar&#237;stides"
              "apellidos" => "Rivas Garc&#237;a"
            ]
            3 => array:2 [
              "nombre" => "Andrea"
              "apellidos" => "Mora Cap&#237;n"
            ]
            4 => array:2 [
              "nombre" => "Gloria"
              "apellidos" => "Guerrero M&#225;rquez"
            ]
            5 => array:2 [
              "nombre" => "Ana Isabel Fern&#225;ndez"
              "apellidos" => "Lorente"
            ]
            6 => array:2 [
              "nombre" => "Pilar Storch"
              "apellidos" => "de Gracia Calvo"
            ]
            7 => array:2 [
              "nombre" => "Eva Benito"
              "apellidos" => "Ruiz"
            ]
            8 => array:2 [
              "nombre" => "Elena Sancho"
              "apellidos" => "Gracia"
            ]
            9 => array:2 [
              "nombre" => "Olga Serrano"
              "apellidos" => "Ayestar&#225;n"
            ]
            10 => array:2 [
              "nombre" => "Cecilio Palomino"
              "apellidos" => "Mu&#241;oz"
            ]
            11 => array:2 [
              "nombre" => "Cristina Cordero"
              "apellidos" => "Castro"
            ]
            12 => array:2 [
              "nombre" => "Sof&#237;a Mesa"
              "apellidos" => "Garc&#237;a"
            ]
            13 => array:2 [
              "nombre" => "Cristina Mu&#241;oz"
              "apellidos" => "L&#243;pez"
            ]
            14 => array:2 [
              "nombre" => "Nuria Clerigu&#233;"
              "apellidos" => "Arrieta"
            ]
            15 => array:2 [
              "nombre" => "Jorge &#193;lvarez"
              "apellidos" => "Garc&#237;a"
            ]
            16 => array:2 [
              "nombre" => "Isabel"
              "apellidos" => "Cubero"
            ]
            17 => array:2 [
              "nombre" => "Jos&#233; Luis Fern&#225;ndez"
              "apellidos" => "Arribas"
            ]
            18 => array:2 [
              "nombre" => "Alberto Barasoain"
              "apellidos" => "Mill&#225;n"
            ]
            19 => array:2 [
              "nombre" => "Juan Alonso Cozar"
              "apellidos" => "Olmo"
            ]
            20 => array:2 [
              "nombre" => "Jos&#233; Luis Cuevas"
              "apellidos" => "Cervera"
            ]
            21 => array:2 [
              "nombre" => "Carlos Garc&#237;a Vao"
              "apellidos" => "Bel"
            ]
            22 => array:2 [
              "nombre" => "M&#46; Jos&#233; Carbonero"
              "apellidos" => "Cel&#237;s"
            ]
            23 => array:2 [
              "nombre" => "M&#46; Jos&#233; Carpio"
              "apellidos" => "Linde"
            ]
            24 => array:2 [
              "nombre" => "M&#46; Teresa Alonso"
              "apellidos" => "Salas"
            ]
          ]
        ]
      ]
    ]
    "idiomaDefecto" => "en"
    "Traduccion" => array:1 [
      "es" => array:9 [
        "pii" => "S1695403318301164"
        "doi" => "10.1016/j.anpedi.2018.03.001"
        "estado" => "S300"
        "subdocumento" => ""
        "abierto" => array:3 [
          "ES" => true
          "ES2" => true
          "LATM" => true
        ]
        "gratuito" => true
        "lecturas" => array:1 [
          "total" => 0
        ]
        "idiomaDefecto" => "es"
        "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S1695403318301164?idApp=UINPBA00005H"
      ]
    ]
    "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S2341287918302175?idApp=UINPBA00005H"
    "url" => "/23412879/0000009000000001/v1_201901020610/S2341287918302175/v1_201901020610/en/main.assets"
  ]
  "en" => array:20 [
    "idiomaDefecto" => true
    "cabecera" => "<span class="elsevierStyleTextfn">Original Article</span>"
    "titulo" => "Health and socio-educational needs of the families and children with rare metabolic diseases&#58; Qualitative study in a tertiary hospital"
    "tieneTextoCompleto" => true
    "paginas" => array:1 [
      0 => array:2 [
        "paginaInicial" => "42"
        "paginaFinal" => "50"
      ]
    ]
    "autores" => array:1 [
      0 => array:4 [
        "autoresLista" => "Eva Mar&#237;a Tejada-Ortigosa, Katherine Flores-Rojas, Laura Moreno-Quintana, Mar&#237;a Carmen Mu&#241;oz-Villanueva, Juan Luis P&#233;rez-Navero, Mercedes Gil-Campos"
        "autores" => array:6 [
          0 => array:3 [
            "nombre" => "Eva Mar&#237;a"
            "apellidos" => "Tejada-Ortigosa"
            "referencia" => array:1 [
              0 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">a</span>"
                "identificador" => "aff0005"
              ]
            ]
          ]
          1 => array:3 [
            "nombre" => "Katherine"
            "apellidos" => "Flores-Rojas"
            "referencia" => array:1 [
              0 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">b</span>"
                "identificador" => "aff0010"
              ]
            ]
          ]
          2 => array:3 [
            "nombre" => "Laura"
            "apellidos" => "Moreno-Quintana"
            "referencia" => array:1 [
              0 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">a</span>"
                "identificador" => "aff0005"
              ]
            ]
          ]
          3 => array:3 [
            "nombre" => "Mar&#237;a Carmen"
            "apellidos" => "Mu&#241;oz-Villanueva"
            "referencia" => array:1 [
              0 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">c</span>"
                "identificador" => "aff0015"
              ]
            ]
          ]
          4 => array:3 [
            "nombre" => "Juan Luis"
            "apellidos" => "P&#233;rez-Navero"
            "referencia" => array:1 [
              0 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">a</span>"
                "identificador" => "aff0005"
              ]
            ]
          ]
          5 => array:4 [
            "nombre" => "Mercedes"
            "apellidos" => "Gil-Campos"
            "email" => array:1 [
              0 => "mercedes&#95;gil&#95;campos&#64;yahoo&#46;es"
            ]
            "referencia" => array:2 [
              0 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">b</span>"
                "identificador" => "aff0010"
              ]
              1 => array:2 [
                "etiqueta" => "<span class="elsevierStyleSup">&#42;</span>"
                "identificador" => "cor0005"
              ]
            ]
          ]
        ]
        "afiliaciones" => array:3 [
          0 => array:3 [
            "entidad" => "Servicio de Pediatr&#237;a&#44; Hospital Universitario Reina Sof&#237;a&#44; Universidad de C&#243;rdoba&#44; Instituto Maim&#243;nides de Investigaci&#243;n Biom&#233;dica de C&#243;rdoba &#40;IMIBIC&#41;&#44; C&#243;rdoba&#44; Spain"
            "etiqueta" => "a"
            "identificador" => "aff0005"
          ]
          1 => array:3 [
            "entidad" => "Unidad de Metabolismo Infantil&#44; Hospital Universitario Reina Sof&#237;a&#44; Universidad de C&#243;rdoba&#44; Instituto Maim&#243;nides de Investigaci&#243;n Biom&#233;dica de C&#243;rdoba &#40;IMIBIC&#41;&#44; Centro de Investigaci&#243;n Biom&#233;dica en Red de Fisiopatolog&#237;a de la Obesidad y Nutrici&#243;n &#40;CIBERObn&#41;&#44; C&#243;rdoba&#44; Spain"
            "etiqueta" => "b"
            "identificador" => "aff0010"
          ]
          2 => array:3 [
            "entidad" => "Unidad de Metodolog&#237;a de la Investigaci&#243;n&#44; Instituto Maim&#243;nides de Investigaci&#243;n Biom&#233;dica de C&#243;rdoba &#40;IMIBIC&#41;&#44; C&#243;rdoba&#44; Spain"
            "etiqueta" => "c"
            "identificador" => "aff0015"
          ]
        ]
        "correspondencia" => array:1 [
          0 => array:3 [
            "identificador" => "cor0005"
            "etiqueta" => "&#8270;"
            "correspondencia" => "Corresponding author&#46;"
          ]
        ]
      ]
    ]
    "titulosAlternativos" => array:1 [
      "es" => array:1 [
        "titulo" => "Necesidades sanitarias y socioeducativas de ni&#241;os con enfermedades raras de tipo metab&#243;lico y sus familias&#58; estudio cualitativo en un hospital de tercer nivel"
      ]
    ]
    "resumenGrafico" => array:2 [
      "original" => 0
      "multimedia" => array:7 [
        "identificador" => "fig0005"
        "etiqueta" => "Figure 1"
        "tipo" => "MULTIMEDIAFIGURA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "figura" => array:1 [
          0 => array:4 [
            "imagen" => "gr1.jpeg"
            "Alto" => 1018
            "Ancho" => 1659
            "Tamanyo" => 86445
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Prevalence of the different diagnoses in paediatric patients with inborn errors of metabolism managed at the Metabolic Disease Unit of a tertiary care hospital &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p>"
        ]
      ]
    ]
    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">The term rare diseases &#40;RDs&#41; refers to a large and heterogeneous group of diseases of which we have little knowledge due to their complex course&#44; as they develop slowly with symptoms that are often nonspecific and highly variable&#44; and their very low prevalence &#40;&#60;5&#47;10<span class="elsevierStyleHsp" style=""></span>000 individuals&#41;&#46; Most have a genetic aetiology and are chronic and degenerative&#44; so that they are disabling or limiting to a variable degree&#46; The need for early diagnosis and multidisciplinary care in these diseases is increasingly evident&#46;<a class="elsevierStyleCrossRefs" href="#bib0200"><span class="elsevierStyleSup">1&#44;2</span></a> All of these challenges are compounded by other factors that hinder their management&#44; such as the low availability and affordability of specific drugs and foods required for their treatment&#44; the scarce knowledge of health professionals about RDs&#44; and the lack of specific health care protocols&#46;<a class="elsevierStyleCrossRefs" href="#bib0210"><span class="elsevierStyleSup">3&#44;4</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Given the health care&#44; social and educational impact of these diseases&#44; we need to assess whether nationwide government interventions succeed in improving the life of affected individuals and their families and meet their basic and special needs&#46;<a class="elsevierStyleCrossRef" href="#bib0220"><span class="elsevierStyleSup">5</span></a> Generally speaking&#44; the social and economic impact of a RD on patients and their families have been addressed by patient organisations&#46;<a class="elsevierStyleCrossRef" href="#bib0225"><span class="elsevierStyleSup">6</span></a> Among the most salient studies on the subject conducted in Spain are the Studies on the situation of the Social and Health Care Needs of Individuals with Rare Diseases in Spain &#40;Estudio sobre la situaci&#243;n de las Necesidades Sociosanitarias de las personas con Enfermedades Raras en Espa&#241;a&#44; ENSERio&#41; 1 and 2&#44; funded by the Federaci&#243;n Espa&#241;ola de Enfermedades Raras &#40;Spanish Federation on Rare Diseases&#41; that assessed the economic&#44; social&#44; educational&#44; health care&#44; psychological and employment dimensions&#46;<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">3</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">The implementation of newborn screening programmes has allowed the early diagnosis and treatment of a few RDs&#46; However&#44; there are multiple factors that impair quality of life in these patients&#44; which has led some authors to investigate their health-related<a class="elsevierStyleCrossRefs" href="#bib0230"><span class="elsevierStyleSup">7&#8211;9</span></a> and overall<a class="elsevierStyleCrossRefs" href="#bib0245"><span class="elsevierStyleSup">10&#44;11</span></a> quality of life&#46; There are also important psychological and psychiatric factors in some of these diseases&#44;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">12&#44;13</span></a> not forgetting the impact of psychosocial factors in the families of affected individuals&#46;<a class="elsevierStyleCrossRef" href="#bib0265"><span class="elsevierStyleSup">14</span></a> Several initiatives have been developed to explore and address needs in these areas that have so far been neglected in RDs&#44; such the Rare Disease Strategy of the National Health System of the Spanish Ministry of Health &#40;Estrategia en Enfermedades Raras del Sistema Nacional de Salud&#44; 2013&#41;&#44; and the Plan for the Care of Individuals Affected by Rare Diseases &#40;Plan de Atenci&#243;n a personas afectadas por Enfermedades Raras&#44; PAER&#41; of the Department of Health of Andalusia&#44;<a class="elsevierStyleCrossRef" href="#bib0205"><span class="elsevierStyleSup">2</span></a> whose general purpose is to ensure adequate planning and management of health care resources used for the care of individuals with RDs and their families to guarantee a high quality of care and equal access&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">The aim of our study was to assess paediatric patients with metabolic RDs followed up at one tertiary care hospital and their families or main caregivers&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Materials and methods</span><p id="par0025" class="elsevierStylePara elsevierViewall">We conducted a nonexperimental&#44; cross-sectional descriptive study&#46; We asked a total of 74 parents and&#47;or legal guardians of paediatric patients with different inborn errors of metabolism &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41; managed in the paediatric clinic of a tertiary care hospital to be interviewed face-to-face or on the telephone&#46; The final sample included 65 respondents&#44; as 5 individuals declined to participate in the survey and we were unable to reach another 4 for the survey&#46; The questionnaire was completed by the parent&#47;legal guardian&#44; or by the patient if the patient was free of intellectual or physical disability&#46; The study was approved by the competent Ethics Committee&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0030" class="elsevierStylePara elsevierViewall">We developed a questionnaire consisting of 70 closed-ended&#44; single-answer items based on the needs expressed during patient visits and related to the variables gathered in the PAER 2008&#8211;2012 plan<a class="elsevierStyleCrossRef" href="#bib0205"><span class="elsevierStyleSup">2</span></a> regarding needs and expectations in the health care&#44; psychosocial&#44; educational and economic &#40;funding of diet and medication&#41; dimensions&#46; We collected data on demographic and other variables in the following areas&#58;</p><p id="par0035" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Health care dimension&#58;</span> newborn screening&#44; treatments used&#44; special medication and diet&#44; other health care services&#44; financial cost and accessibility of these resources&#46; We also analysed variables related to disability&#44; dependence&#44; financial assistance&#44; health care&#44; lack of coverage&#44; scientific knowledge of the disease&#44; help from organisations and research&#46;</p><p id="par0040" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Educational dimension&#58;</span> type of education&#44; school-based and home-based support&#44; health professionals involved in school&#44; bullying&#46;</p><p id="par0045" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Psychosocial dimension&#58;</span> quality of life of paediatric patients and their caregivers&#44; main caregiver categories&#44; psychological support&#44; family structure&#44; employment&#44; and other variables related to the need to care for the affected individual&#46;</p><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Statistical analysis</span><p id="par0050" class="elsevierStylePara elsevierViewall">We performed a descriptive analysis of all the variables under study&#44; expressing quantitative variables as mean&#44; standard deviation&#44; median and interquartile range&#44; and qualitative variables as absolute and relative frequencies&#46; We also compared the proportions of some variables of interest by means of the chi square test &#40;<span class="elsevierStyleItalic">&#967;</span><span class="elsevierStyleSup">2</span>&#41; for contingency tables&#46; In the case of 2<span class="elsevierStyleHsp" style=""></span>&#215;<span class="elsevierStyleHsp" style=""></span>2 contingency tables&#44; we used the <span class="elsevierStyleItalic">&#967;</span><span class="elsevierStyleSup">2</span> with the Yates correction or&#44; if any of the expected frequencies was less than or equal to 5&#44; the Fisher exact test&#46; We performed the analysis with the software SPSS 18&#46;0&#46;</p></span></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Results</span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Health care</span><p id="par0055" class="elsevierStylePara elsevierViewall">In our study&#44; a significant percentage of paediatric patients &#40;78&#46;5&#37;&#41; had diseases that could not be diagnosed through neonatal screening&#44; as they were not included in the early-detection Newborn Endocrine-Metabolic Disease Screening Programme of Andalusia&#46; This screening usually includes diseases in which early intervention allows modification of the course of disease&#44; reducing morbidity and mortality and the incidence of potential disabilities associated with the disease&#46; Of the patients in whom screening prompted diagnosis&#44; 7&#46;7&#37; experienced the onset before the results of screening became available&#46; Most of these patients received a genetic diagnosis&#44; and prenatal diagnosis of the same disease was made in 12&#37; of their families in subsequent pregnancies &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0060" class="elsevierStylePara elsevierViewall">When it came to treatment&#44; families reported having difficulties regarding the low availability and accessibility of dietary products &#40;needed by 54&#37; of the sample&#41;&#44; medication and other resources &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#46; We found a high percentage of patients that required drugs and products that were not funded by the health care system&#44; and a frequent need to resort to compounding for the appropriate medication of the patients &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#44; in addition to other services not covered by public health &#40;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#41;&#46; These patients had some degree of physical and&#47;or psychiatric impairment&#44; which was assessed objectively by external professionals that produced a report on the disability rate of patients &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#44; based on which most of them received some type of financial assistance from the state &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia><elsevierMultimedia ident="fig0010"></elsevierMultimedia><p id="par0065" class="elsevierStylePara elsevierViewall">In general&#44; respondents perceived the health care received as good or very good&#46; More than half believed that they had been receiving sufficient and understandable information about the disease&#44; although the health care system had few resources for the management of RDs&#46; They rated the competence of primary care health care providers in managing the disease in the patient as low &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41;&#44; and believed that they had little scientific knowledge of the disease &#40;69&#46;2&#37;&#41;&#46; On the other hand&#44; up to 71&#37; reported receiving sufficient and adequate support from specialty health care providers&#46; Up to 54&#37; of families were members of patient organisations related to the disease of their children&#44; and most participated in research in RDs &#40;69&#37;&#41;&#46; Twenty percent of patients had participated in a clinical trial focused on their disease&#46;</p><elsevierMultimedia ident="fig0015"></elsevierMultimedia></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Socioeducational care</span><p id="par0070" class="elsevierStylePara elsevierViewall">Most respondents had a vocational education&#44; and 21&#46;5&#37; a university degree&#46; We did not find statistically significant differences in the perception of health care based on parental educational attainment &#40;<span class="elsevierStyleItalic">&#967;</span><span class="elsevierStyleSup">2</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>1&#46;667&#59; <span class="elsevierStyleItalic">P</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>&#46;221&#41;&#46; A high proportion of patients were enrolled in general education classrooms or in general education with additional support &#40;72&#46;3&#37;&#41;&#58; 52&#46;6&#37; of the patients required additional educational support&#44; and more than half received this support from a support teacher on staff in their respective schools&#46; In addition to the education received at school&#44; 38&#37; received tutoring at home &#40;<a class="elsevierStyleCrossRef" href="#tbl0015">Table 3</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0015"></elsevierMultimedia><p id="par0075" class="elsevierStylePara elsevierViewall">Most of the schools where the patients were enrolled did not have health professionals on staff that could tend to the specific needs of their disease &#40;91&#37;&#41;&#46; Some schools had facilities that were not easily accessible for disabled individuals &#40;23&#37;&#41;&#46; In general&#44; the services received in the school were perceived as good&#44; very good or excellent &#40;66&#37;&#41;&#44; while 12&#37; considered them very poor&#46; Some patients with inborn errors of metabolism &#40;IEMs&#41; suffered bullying of some kind&#58; social&#44; verbal or physical &#40;<a class="elsevierStyleCrossRef" href="#tbl0015">Table 3</a>&#41;&#46;</p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Quality of life</span><p id="par0080" class="elsevierStylePara elsevierViewall">The quality of life of the patients declined significantly from the onset of symptoms in 43&#37; of the sample&#44; and even more in patients that required significant adjustments to their diet &#40;52&#46;1&#37;&#41; &#40;<a class="elsevierStyleCrossRef" href="#tbl0020">Table 4</a>&#41;&#46; However&#44; we did not find statistically significant differences in patient quality of life based on the need for a modified diet &#40;<span class="elsevierStyleItalic">&#967;</span><span class="elsevierStyleSup">2</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;083&#59; <span class="elsevierStyleItalic">P</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>&#46;974&#41;&#46;</p><elsevierMultimedia ident="tbl0020"></elsevierMultimedia><p id="par0085" class="elsevierStylePara elsevierViewall">Some respondents believed the patient needed an additional caregiver &#40;26&#46;6&#37;&#41;&#44; as in most cases the daily care was provided by a family member&#46; Many main caregivers&#44; who were usually the mother &#40;61&#46;5&#37;&#41;&#44; had reduced their working hours or quit working altogether &#40;77&#46;4&#37; of caregivers&#41;&#44; and had not received support from their workplaces to balance work with caring for the patient &#40;56&#37;&#41;&#46; The proportion that received psychological support from the health care system was 4&#46;6&#37;&#44; and we did not find a significant association between this factor and perceived quality of life &#40;<span class="elsevierStyleItalic">&#967;</span><span class="elsevierStyleSup">2</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;229&#59; <span class="elsevierStyleItalic">P</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>1&#46;000&#41;&#46; The most frequent family structure was the two-parent household&#44; and 15&#46;4&#37; of parents were separated &#40;<a class="elsevierStyleCrossRef" href="#tbl0020">Table 4</a>&#41;&#44; of who 50&#37; reported believing that the disease of their children contributed to the separation&#46;</p></span></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Discussion</span><p id="par0090" class="elsevierStylePara elsevierViewall">Our study revealed health care&#44; socioeducational and economic needs of paediatric patients with inborn errors of metabolism and their caregivers that were not considered in the PAER&#46; Similarly&#44; the findings of studies focused on health care and social factors&#44; such as the ENSERio studies 1 and 2&#44; have demonstrated the economic&#44; social&#44; educational&#44; health care&#44; psychological and occupational impact of these diseases in affected children and their families&#46;</p><p id="par0095" class="elsevierStylePara elsevierViewall">Unlike other studies focused on specific diseases&#44; such as phenylketonuria&#44;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">15</span></a> galactosaemia<a class="elsevierStyleCrossRef" href="#bib0275"><span class="elsevierStyleSup">16</span></a> or mucopolysaccharidosis&#44;<a class="elsevierStyleCrossRef" href="#bib0280"><span class="elsevierStyleSup">17</span></a> our study included patients with a variety of metabolic diseases&#46; We ought to underscore that we assessed the quality of life of patients and caregivers in relation to their specific diseases by means of the questionnaire used in our study&#44; similar to other instruments&#58; the Paediatric Quality of Life Inventory&#44;<a class="elsevierStyleCrossRefs" href="#bib0250"><span class="elsevierStyleSup">11&#44;18</span></a> the WHOQOL Questionnaire-100<a class="elsevierStyleCrossRef" href="#bib0250"><span class="elsevierStyleSup">11</span></a> or the Child Health Questionnaire 28-item Parent Form&#46;<a class="elsevierStyleCrossRef" href="#bib0285"><span class="elsevierStyleSup">18</span></a> However&#44; the fact that we investigated different forms of metabolic disease may have also been a limitation in our analysis&#44; as the fulfilment of associated needs may vary widely between diseases&#46; In our study&#44; we sought to assess these aspects in all patients followed in a specialised metabolic disease unit&#44; regardless of their specific diseases&#44; and&#44; as was the case of the PAER&#44; whether those needs were met appropriately&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">Five family members of the total possible participants declined to do the survey&#44; and the reason given for refusal was the death of the patient&#46; This very small number reduces the risk of nonresponse bias by which the survey data would show a greater-than-actual satisfaction&#46;</p><p id="par0105" class="elsevierStylePara elsevierViewall">On the other hand&#44; in agreement with previous studies&#44; our data revealed the limited knowledge of health professionals regarding these diseases&#44; which is often associated with diagnostic delays&#46;<a class="elsevierStyleCrossRef" href="#bib0290"><span class="elsevierStyleSup">19</span></a> Even though prenatal testing in subsequent pregnancies could have a significant impact on family planning in families that have already had one child with an inborn error of metabolism&#44; few of these families receive specialised genetic counselling&#46;<a class="elsevierStyleCrossRef" href="#bib0295"><span class="elsevierStyleSup">20</span></a> A similar situation has been reported in other highly developed countries&#46;<a class="elsevierStyleCrossRefs" href="#bib0210"><span class="elsevierStyleSup">3&#44;4&#44;21&#44;22</span></a> The ENSERio and ERES studies in Spain revealed that the time elapsed from the onset of symptoms to diagnosis of RDs is almost 5 years in the adult population and 1 year in the paediatric population&#44; figures that&#44; compared to the delays in diagnosis in other&#44; common diseases &#40;severe or not&#41; is quite substantial&#46; Specific training of health professionals in RDs could contribute to reducing diagnostic delays and their negative repercussions&#44; such as delayed or inadequate treatment and performance of unnecessary tests&#46;<a class="elsevierStyleCrossRefs" href="#bib0310"><span class="elsevierStyleSup">23&#44;24</span></a></p><p id="par0110" class="elsevierStylePara elsevierViewall">When it came to medication and other health care products&#44; patients reported having little to no access to what they required&#46; As reported in the previous literature&#44; the most frequent difficulties were the high price of these products&#44; their low availability&#44; or even the impossibility of obtaining them in the country of residence of the patient&#46;<a class="elsevierStyleCrossRef" href="#bib0320"><span class="elsevierStyleSup">25</span></a> Respondents also reported that Social Security funded required medication and health products only in part&#44; which was consistent with the findings of the study conducted by the Federaci&#243;n Espa&#241;ola de Enfermedades Raras&#44;<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">3</span></a> although level of coverage of specific expenses was not specified&#46; In the paediatric patients in our sample&#44; the high proportion that required medication or special dietary products not covered by the health system was compounded by the amount of services that were not offered on a long-term basis in the Spanish public health system&#44; such as nutritionists&#44; psychologists to support the family after the diagnosis&#44; rehabilitation&#44; physical therapy or speech therapy &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#46;</p><p id="par0115" class="elsevierStylePara elsevierViewall">Eighty-nine percent of patients in our study received some type of financial assistance from the state&#44; although in other surveys families have reported that this assistance is quite insufficient to meet the needs of the patients&#44; especially when it comes to medication&#46;<a class="elsevierStyleCrossRef" href="#bib0215"><span class="elsevierStyleSup">4</span></a></p><p id="par0120" class="elsevierStylePara elsevierViewall">In our sample&#44; 21&#46;5&#37; of the families perceived the health care they received as poor or just sufficient&#44; and 62&#46;5&#37; considered primary care services deficient or barely adequate &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41;&#44; which was consistent with other studies&#44; such as the EurodisCare-3&#44; which ranked Spain as the European country with the lowest satisfaction &#40;20&#37;&#41; with health care services related to the management of RDs&#46;<a class="elsevierStyleCrossRef" href="#bib0300"><span class="elsevierStyleSup">21</span></a> In the ENSERio study&#44; the percentage of dissatisfied participants even exceeded 47&#37;&#44; which could be explained by the more than 200 different diagnoses it contemplated&#44; of which some have extremely low prevalences&#44;<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">3</span></a> compared to the sample of patients with 16 different RDs in the EurodisCare-3 study&#46; This perception seems to be associated with the scarcity of resources available in the health care system to manage these diseases and the lack of reference centres in the geographical area of the patients&#46; To this we must add the lack of specific protocols or management strategies&#44; not forgetting the very limited or incomprehensible information that health professionals give these patients&#46;<a class="elsevierStyleCrossRef" href="#bib0325"><span class="elsevierStyleSup">26</span></a></p><p id="par0125" class="elsevierStylePara elsevierViewall">The educational attainment of parents may have a significant impact on the treatment of their children&#44; as it can lead to a lesser adherence to dietary measures or other treatments&#46;<a class="elsevierStyleCrossRefs" href="#bib0330"><span class="elsevierStyleSup">27&#44;28</span></a> In our study&#44; caregivers with a university degree were the minority&#44; and 35&#46;4&#37; of caregivers had an education at the primary school level&#46; Most patients were in general education classrooms&#44; with or without additional support from the school that they attended&#44; and these patients were subject to some type of bullying&#46; As a result&#44; some authors consider that these children should attend schools offering special education programmes to reduce the social pressure they experience&#46;<a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">27</span></a></p><p id="par0130" class="elsevierStylePara elsevierViewall">Other authors have focused on aspects related to educational services that have an impact on the quality of life of patients with inborn errors of metabolism&#44; such as attention problems&#44; school problems&#44; lower achievement motivation&#44; lower social skills&#44; lower sense of autonomy and lower self-esteem&#46; Self-esteem and family cohesion are the areas with the highest impact on quality of life&#44; sometimes exceeding the impact of physical impairment or pain&#46;<a class="elsevierStyleCrossRef" href="#bib0340"><span class="elsevierStyleSup">29</span></a> In adulthood&#44; these patients are also likely to suffer from depressive moods&#44; generalised anxiety&#44; phobias&#44; decreased positive affect&#44; social immaturity and social withdrawal<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">12&#44;13</span></a> independently of the management of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">30</span></a> In our study&#44; we did not analyse these educational aspects with that level of detail&#44; but assessed the need of additional educational support&#44; which was perceived as needed in more than half of the cases and was delivered at the home&#46;</p><p id="par0135" class="elsevierStylePara elsevierViewall">Nearly half of respondents considered that their quality of life had substantially declined from the onset of symptoms&#46; More than 50&#37; of patients that required a modified diet associated this decrease to their dietary needs&#44; although we did not find a statistically significant association between the impairment in quality of life and the need of a special diet&#44; probably because our sample was too small to detect it&#46; In a study with a similar sample size&#44; Bilginsoy et al&#46;<a class="elsevierStyleCrossRef" href="#bib0350"><span class="elsevierStyleSup">31</span></a> noted that the management of the diet and its impact on the parents&#8217; social life could be considered among the chief sources of stress in the family&#46; This study also suggested that the special dietary needs of children were a factor that contributed substantially to the decrease in quality of life in their caregivers &#40;48&#46;5&#37;&#41;&#46; This evinces the need to develop strategies to facilitate the integration of specialised dietary treatment in the routine of the household&#44; promoting adequate adherence and improving the quality of life of the patient and the remaining household members&#46;<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">32</span></a></p><p id="par0140" class="elsevierStylePara elsevierViewall">Of the patients in our sample&#44; 56&#46;8&#37; considered that the onset of disease had had little impact on their quality of life&#46; This could be because when patients start treatment early with medication and&#47;or a specific diet&#44; and depending on the type of RD and the acceptance of illness&#44; the improved outcomes influence this perception&#46;<a class="elsevierStyleCrossRef" href="#bib0250"><span class="elsevierStyleSup">11</span></a></p><p id="par0145" class="elsevierStylePara elsevierViewall">Of the surveyed family members&#44; 45&#37; considered that their quality of life had diminished significantly since the onset of disease in their children&#44; which in many cases required an additional caregiver&#44; a reduction of working hours or even quitting work to adapt their lives to care for the patient &#40;<a class="elsevierStyleCrossRef" href="#tbl0020">Table 4</a>&#41;&#46; Dependency in these diseases involves the need for personal care assistance&#44; which usually falls to the main caregivers with considerable repercussions in their social life&#44; work and education&#44; especially in women&#46;<a class="elsevierStyleCrossRefs" href="#bib0210"><span class="elsevierStyleSup">3&#44;6</span></a> In fact&#44; some parents try multiple adaptive strategies to integrate the complex protocols for the management of their children&#39;s disease in the daily routine of the household&#46;<a class="elsevierStyleCrossRef" href="#bib0360"><span class="elsevierStyleSup">33</span></a></p><p id="par0150" class="elsevierStylePara elsevierViewall">Some authors propose that parental quality of life may be the best indicator to assess how parents are coping with their children&#39;s disease&#44;<a class="elsevierStyleCrossRef" href="#bib0365"><span class="elsevierStyleSup">34</span></a> defining quality of life as optimal physical and psychological wellbeing and social functioning and&#44; as regards the dimensions associated to the child&#39;s disease&#44; achieving emotional stability and satisfaction with family life&#46; Emotional support and psychosocial wellbeing are key predictors of the quality of life of parents both at home and socially&#46;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">15&#44;35</span></a> For example&#44; there is evidence of an association between a divorced and&#47;or unemployed status of parents and low adherence to treatments&#46;<a class="elsevierStyleCrossRefs" href="#bib0325"><span class="elsevierStyleSup">26&#44;36</span></a> There are also studies that have assessed social factors&#44; such as family social status based on the number of children in the family&#44; the number of affected children&#44; the educational attainment&#44; employment status and marital status of the parents&#44; and the need for intervention when certain factors are combined&#46;<a class="elsevierStyleCrossRefs" href="#bib0325"><span class="elsevierStyleSup">26&#44;37</span></a></p><p id="par0155" class="elsevierStylePara elsevierViewall">For all of the above&#44; psychological support and social counselling should be available through the public health care system&#46;<a class="elsevierStyleCrossRefs" href="#bib0385"><span class="elsevierStyleSup">38&#44;39</span></a> In our survey&#44; most caregivers did not report receiving this type of assistance&#46;</p><p id="par0160" class="elsevierStylePara elsevierViewall">In conclusion&#44; the results of our study show that the appropriate delivery of multidisciplinary treatment with a specific diet&#44; medication and daily support services is affected by the inability of families to face its high costs and the low accessibility to these resources&#46; These diseases have a considerable impact on the quality of life of patients&#44; but especially of their main caregivers&#58; nearly half of respondents perceived a very deleterious impact on their social&#44; professional and family life&#46; Thus&#44; research should be conducted to assess the outcomes of health care&#44; social and financial support programmes aimed at ill individuals and their caregivers to then address their needs&#46;</p></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0105">Conflicts of interest</span><p id="par0165" class="elsevierStylePara elsevierViewall">The authors have no conflicts of interest to declare&#46;</p></span></span>"
    "textoCompletoSecciones" => array:1 [
      "secciones" => array:10 [
        0 => array:3 [
          "identificador" => "xres1132489"
          "titulo" => "Abstract"
          "secciones" => array:4 [
            0 => array:2 [
              "identificador" => "abst0005"
              "titulo" => "Introduction"
            ]
            1 => array:2 [
              "identificador" => "abst0010"
              "titulo" => "Material and method"
            ]
            2 => array:2 [
              "identificador" => "abst0015"
              "titulo" => "Results"
            ]
            3 => array:2 [
              "identificador" => "abst0020"
              "titulo" => "Conclusions"
            ]
          ]
        ]
        1 => array:2 [
          "identificador" => "xpalclavsec1065091"
          "titulo" => "Keywords"
        ]
        2 => array:3 [
          "identificador" => "xres1132490"
          "titulo" => "Resumen"
          "secciones" => array:4 [
            0 => array:2 [
              "identificador" => "abst0025"
              "titulo" => "Introducci&#243;n"
            ]
            1 => array:2 [
              "identificador" => "abst0030"
              "titulo" => "Material y m&#233;todo"
            ]
            2 => array:2 [
              "identificador" => "abst0035"
              "titulo" => "Resultados"
            ]
            3 => array:2 [
              "identificador" => "abst0040"
              "titulo" => "Conclusiones"
            ]
          ]
        ]
        3 => array:2 [
          "identificador" => "xpalclavsec1065092"
          "titulo" => "Palabras clave"
        ]
        4 => array:2 [
          "identificador" => "sec0005"
          "titulo" => "Introduction"
        ]
        5 => array:3 [
          "identificador" => "sec0010"
          "titulo" => "Materials and methods"
          "secciones" => array:1 [
            0 => array:2 [
              "identificador" => "sec0015"
              "titulo" => "Statistical analysis"
            ]
          ]
        ]
        6 => array:3 [
          "identificador" => "sec0020"
          "titulo" => "Results"
          "secciones" => array:3 [
            0 => array:2 [
              "identificador" => "sec0025"
              "titulo" => "Health care"
            ]
            1 => array:2 [
              "identificador" => "sec0030"
              "titulo" => "Socioeducational care"
            ]
            2 => array:2 [
              "identificador" => "sec0035"
              "titulo" => "Quality of life"
            ]
          ]
        ]
        7 => array:2 [
          "identificador" => "sec0040"
          "titulo" => "Discussion"
        ]
        8 => array:2 [
          "identificador" => "sec0045"
          "titulo" => "Conflicts of interest"
        ]
        9 => array:1 [
          "titulo" => "References"
        ]
      ]
    ]
    "pdfFichero" => "main.pdf"
    "tienePdf" => true
    "fechaRecibido" => "2017-11-14"
    "fechaAceptado" => "2018-03-01"
    "PalabrasClave" => array:2 [
      "en" => array:1 [
        0 => array:4 [
          "clase" => "keyword"
          "titulo" => "Keywords"
          "identificador" => "xpalclavsec1065091"
          "palabras" => array:8 [
            0 => "Rare diseases"
            1 => "Inborn errors of metabolism"
            2 => "Quality of life"
            3 => "Children"
            4 => "Parents"
            5 => "Family support"
            6 => "Social support"
            7 => "Health system"
          ]
        ]
      ]
      "es" => array:1 [
        0 => array:4 [
          "clase" => "keyword"
          "titulo" => "Palabras clave"
          "identificador" => "xpalclavsec1065092"
          "palabras" => array:8 [
            0 => "Enfermedades raras"
            1 => "Errores innatos del metabolismo"
            2 => "Calidad de vida"
            3 => "Ni&#241;os"
            4 => "Padres"
            5 => "Apoyo familiar"
            6 => "Apoyo social"
            7 => "Sistema sanitario"
          ]
        ]
      ]
    ]
    "tieneResumen" => true
    "resumen" => array:2 [
      "en" => array:3 [
        "titulo" => "Abstract"
        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Introduction</span><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Rare diseases are a challenge for public health due to the lack of information on their magnitude&#46; These include inborn errors of metabolism&#46; The objective of this study was to assess the quality of life and social&#44; health&#44; economic&#44; and educational needs of a group of paediatric patients with inborn errors of metabolism attended to in a hospital&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Material and method</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">A questionnaire was developed based on the needs and expectations&#44; based mainly on the Andalusian Plan for Rare Diseases&#46; An analysis was performed on the variables of health&#44; socioeconomic&#44; and educational needs of 65 paediatric patients with inborn errors of metabolism&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Results</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">The respondents showed few possibilities to cope with medication &#40;61&#37;&#41;&#44; special diet &#40;86&#37;&#41;&#44; and other health benefits &#40;79&#37;&#41;&#46; Just under half of them &#40;43&#37;&#41; believed that the quality of family life had been greatly reduced since the onset of the disease&#46; The main caregiver was the mother in 61&#46;5&#37; of cases&#44; compared to 1&#46;5&#37; of cases in which it was the father&#46; The primary caregivers had to reduce their working hours or give up their job in 77&#37; of cases&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Conclusions</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">The multidisciplinary treatment is affected by the inability of families to cope with a high cost&#44; as well as with difficult access to these resources&#46; In addition&#44; there is great impact on the quality of life of patients&#44; and their caregivers&#46; Therefore&#44; there is a need to evaluate the results of government health and socio-economic support plans for patients with rare diseases&#44; and make a real response to their needs&#46;</p></span>"
        "secciones" => array:4 [
          0 => array:2 [
            "identificador" => "abst0005"
            "titulo" => "Introduction"
          ]
          1 => array:2 [
            "identificador" => "abst0010"
            "titulo" => "Material and method"
          ]
          2 => array:2 [
            "identificador" => "abst0015"
            "titulo" => "Results"
          ]
          3 => array:2 [
            "identificador" => "abst0020"
            "titulo" => "Conclusions"
          ]
        ]
      ]
      "es" => array:3 [
        "titulo" => "Resumen"
        "resumen" => "<span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Introducci&#243;n</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">Las enfermedades raras suponen un reto para la salud p&#250;blica debido a la escasa informaci&#243;n sobre su magnitud&#46; Entre ellas destacan los errores cong&#233;nitos del metabolismo&#46; El objetivo de este estudio fue valorar la calidad de vida y las posibles necesidades de un grupo de pacientes pedi&#225;tricos con errores cong&#233;nitos del metabolismo asistidos en un hospital de tercer nivel&#44; y de sus familiares o cuidadores principales&#46;</p></span> <span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Material y m&#233;todo</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Se desarroll&#243; un cuestionario basado en las necesidades y expectativas recogidas fundamentalmente en el Plan Andaluz para las Enfermedades Raras&#46; Se analizaron variables de los &#243;rdenes sociosanitario&#44; econ&#243;mico y educativo en 65 pacientes pedi&#225;tricos con errores cong&#233;nitos del metabolismo&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Resultados</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Los encuestados manifestaron escasas posibilidades para afrontar el gasto de la medicaci&#243;n &#40;61&#37;&#41;&#44; alimentaci&#243;n especial &#40;86&#37;&#41; y otras prestaciones sanitarias &#40;79&#37;&#41;&#46; El 43&#37; consideraron que la calidad de vida familiar se afect&#243; bastante desde la aparici&#243;n de la enfermedad&#46; En el 61&#44;5&#37; la cuidadora principal fue la madre&#44; frente al 1&#44;5&#37; de casos en los que fue el padre&#46; El cuidador principal redujo su jornada laboral o abandon&#243; su trabajo en el 77&#37; de los casos&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Conclusiones</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">El tratamiento multidisciplinar se ve afectado por la imposibilidad de las familias para hacer frente a su elevado coste&#44; junto a una dif&#237;cil accesibilidad a dichos recursos&#46; Adem&#225;s&#44; existe gran repercusi&#243;n en la calidad de vida de los pacientes y sus cuidadores&#46; Por tanto&#44; deber&#237;an evaluarse los resultados de los planes gubernamentales de apoyo sanitario y socioecon&#243;mico a pacientes con enfermedades raras&#44; y conseguir una respuesta real a sus necesidades&#46;</p></span>"
        "secciones" => array:4 [
          0 => array:2 [
            "identificador" => "abst0025"
            "titulo" => "Introducci&#243;n"
          ]
          1 => array:2 [
            "identificador" => "abst0030"
            "titulo" => "Material y m&#233;todo"
          ]
          2 => array:2 [
            "identificador" => "abst0035"
            "titulo" => "Resultados"
          ]
          3 => array:2 [
            "identificador" => "abst0040"
            "titulo" => "Conclusiones"
          ]
        ]
      ]
    ]
    "NotaPie" => array:1 [
      0 => array:2 [
        "etiqueta" => "&#9734;"
        "nota" => "<p class="elsevierStyleNotepara" id="npar0025">Please cite this article as&#58; Tejada-Ortigosa EM&#44; Flores-Rojas K&#44; Moreno-Quintana L&#44; Mu&#241;oz-Villanueva MC&#44; P&#233;rez-Navero JL&#44; Gil-Campos M&#46; Necesidades sanitarias y socioeducativas de ni&#241;os con enfermedades raras de tipo metab&#243;lico y sus familias&#58; estudio cualitativo en un hospital de tercer nivel&#46; An Pediatr &#40;Barc&#41;&#46; 2019&#59;90&#58;42&#8211;50&#46;</p>"
      ]
    ]
    "multimedia" => array:7 [
      0 => array:7 [
        "identificador" => "fig0005"
        "etiqueta" => "Figure 1"
        "tipo" => "MULTIMEDIAFIGURA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "figura" => array:1 [
          0 => array:4 [
            "imagen" => "gr1.jpeg"
            "Alto" => 1018
            "Ancho" => 1659
            "Tamanyo" => 86445
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Prevalence of the different diagnoses in paediatric patients with inborn errors of metabolism managed at the Metabolic Disease Unit of a tertiary care hospital &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p>"
        ]
      ]
      1 => array:7 [
        "identificador" => "fig0010"
        "etiqueta" => "Figure 2"
        "tipo" => "MULTIMEDIAFIGURA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "figura" => array:1 [
          0 => array:4 [
            "imagen" => "gr2.jpeg"
            "Alto" => 1134
            "Ancho" => 2108
            "Tamanyo" => 121483
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0050" class="elsevierStyleSimplePara elsevierViewall">Percentage of surveyed family members of paediatric patients with inborn errors of metabolism that reported unavailability of health care services &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>47&#41;&#46;</p>"
        ]
      ]
      2 => array:7 [
        "identificador" => "fig0015"
        "etiqueta" => "Figure 3"
        "tipo" => "MULTIMEDIAFIGURA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "figura" => array:1 [
          0 => array:4 [
            "imagen" => "gr3.jpeg"
            "Alto" => 914
            "Ancho" => 1571
            "Tamanyo" => 69355
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0055" class="elsevierStyleSimplePara elsevierViewall">Distribution of the rating of primary care services given by surveyed family members of paediatric patients with inborn errors of metabolism &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p> <p id="spar0060" class="elsevierStyleSimplePara elsevierViewall">Health care&#58; &#40;1&#41; poor&#47;sufficient&#59; &#40;2&#41; good&#47;very good&#59; &#40;3&#41; excellent&#46;</p> <p id="spar0065" class="elsevierStyleSimplePara elsevierViewall">Health care resources&#58; &#40;1&#41; minimal&#47;few&#59; &#40;2&#41; sufficient&#59; &#40;3&#41; plentiful&#46;</p> <p id="spar0070" class="elsevierStyleSimplePara elsevierViewall">Health information&#58; &#40;1&#41; incomprehensible&#59; &#40;2&#41; scarce&#59; &#40;3&#41; understandable and adequate&#46;</p> <p id="spar0075" class="elsevierStyleSimplePara elsevierViewall">Primary care&#58; &#40;1&#41; deficient&#59; &#40;2&#41; barely adequate&#59; &#40;3&#41; highly competent&#46;</p>"
        ]
      ]
      3 => array:8 [
        "identificador" => "tbl0005"
        "etiqueta" => "Table 1"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "detalles" => array:1 [
          0 => array:3 [
            "identificador" => "at1"
            "detalle" => "Table "
            "rol" => "short"
          ]
        ]
        "tabla" => array:3 [
          "leyenda" => "<p id="spar0085" class="elsevierStyleSimplePara elsevierViewall">IQR&#44; interquartile range&#59; SD&#44; standard deviation&#46;</p>"
          "tablatextoimagen" => array:2 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Characteristics&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Mean<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>SD&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Median<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>IQR&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Age &#40;years&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">10&#46;7<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>9&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">8<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>11&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Age at diagnosis<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">a</span></a> &#40;months&#41; &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>45&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">16&#46;3<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>27&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">6<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>16&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Number of hospitalizations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">16&#46;9<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>37&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">5<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Number of hospitalizations related to disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&#46;9<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>38&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">3<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Percentage of disability &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>45&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">58&#46;0<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>18&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">65<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>35&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab1932363.png"
              ]
            ]
            1 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Diagnosis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Count&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Percentage&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Newborn screening&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Clinical manifestations &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>51&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">In child<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">46&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">90&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">In relative&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">9&#46;8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Genetic diagnosis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">60&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">92&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Prenatal diagnosis &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>59&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">11&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab1932362.png"
              ]
            ]
          ]
          "notaPie" => array:1 [
            0 => array:3 [
              "identificador" => "tblfn0005"
              "etiqueta" => "a"
              "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Variable evaluated based on a series of sequential questions in a specific percentage of the patients&#46;</p>"
            ]
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0080" class="elsevierStyleSimplePara elsevierViewall">of the paediatric patients with inborn errors of metabolism included in the sample &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p>"
        ]
      ]
      4 => array:8 [
        "identificador" => "tbl0010"
        "etiqueta" => "Table 2"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "detalles" => array:1 [
          0 => array:3 [
            "identificador" => "at2"
            "detalle" => "Table "
            "rol" => "short"
          ]
        ]
        "tabla" => array:2 [
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Count&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Percentage&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleBold">Diet</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Patients requiring a special diet</span><a class="elsevierStyleCrossRef" href="#tblfn0010"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">35&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">53&#46;8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Availability of special foods &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">35&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0010"><span class="elsevierStyleSup">a</span></a></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Very scarce&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">22&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Scarce&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">40&#46;0&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Widely available&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">13&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">37&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Financial ability to afford related expenses &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">35&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0010"><span class="elsevierStyleSup">a</span></a></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Cannot afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">25&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Can partly afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">60&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Can fully afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Receives financial assistance for dietary needs &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">54&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">40&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleBold">Medication</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Availability of medication &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">56&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Very scarce&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">11&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">19&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Scarce&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">17&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">30&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Widely available&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">28&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">50&#46;0&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Financial ability to afford medication &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">56&#41;</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Cannot afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">13&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Can partly afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">37&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Can fully afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">39&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Medication funded by health system &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">54&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">27&#46;8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Dosage adjustments for paediatric use &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">55&#41;</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>No&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">12&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Some&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">13&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Moderate&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">12&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Full&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">18&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">32&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Patient requires compounded medication &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">55&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">31&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">56&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleBold">Services&#58; physical therapy&#44; rehabilitation&#44; speech therapy</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Access to resources &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">46&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Very difficult&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Difficult&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">45&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Easy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">18&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">39&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Financial ability to afford related expenses &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">47&#41;</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Cannot afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">11&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Can partly afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">26&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">55&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Can mostly or fully afford&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleBold">Disability</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Presence of disability due to the disease</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>No&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Yes&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Physical&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Psychiatric&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">7&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Both&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">31&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">47&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Has disability report &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">50&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">49&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">98&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Support services for dependent individuals</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">55&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">84&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Financial assistance from state</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">58&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">89&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab1932361.png"
              ]
            ]
          ]
          "notaPie" => array:1 [
            0 => array:3 [
              "identificador" => "tblfn0010"
              "etiqueta" => "a"
              "nota" => "<p class="elsevierStyleNotepara" id="npar0010">Variable analysed based on the previous answer&#46;</p>"
            ]
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0090" class="elsevierStyleSimplePara elsevierViewall">Analysis of health care variables&#58; accessibility of resources for the surveyed families of paediatric patients with inborn errors of metabolism &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p>"
        ]
      ]
      5 => array:8 [
        "identificador" => "tbl0015"
        "etiqueta" => "Table 3"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "detalles" => array:1 [
          0 => array:3 [
            "identificador" => "at3"
            "detalle" => "Table "
            "rol" => "short"
          ]
        ]
        "tabla" => array:2 [
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Variables&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Count&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Percentage&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleItalic">Educational attainment of respondent</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Currently in school&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">35&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Vocational education&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">28&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">43&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>University degree&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleItalic">Type of education received in school</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>General&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">24&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">36&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>General with support&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">35&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Special&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">12&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">18&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Not enrolled in school&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">9&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Need for additional academic support &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">57&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0015"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">30&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">52&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Support teacher available in school &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">30&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0015"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">73&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Need for home tutoring &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">58&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0015"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">37&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Home-based support provided by the school &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">22&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0015"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">9&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Patients suffering some type of bullying</span><a class="elsevierStyleCrossRef" href="#tblfn0015"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">18&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">27&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleItalic">Type of bullying &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">18&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0015"><span class="elsevierStyleSup">a</span></a></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Social&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">83&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Verbal&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">12&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">66&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Physical&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">16&#46;7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab1932364.png"
              ]
            ]
          ]
          "notaPie" => array:1 [
            0 => array:3 [
              "identificador" => "tblfn0015"
              "etiqueta" => "a"
              "nota" => "<p class="elsevierStyleNotepara" id="npar0015">Variables analysed based on the previous answer&#46;</p>"
            ]
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0095" class="elsevierStyleSimplePara elsevierViewall">Assessment of socioeducational variables related to the services received from the schools attended by paediatric patients with inborn errors of metabolism &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p>"
        ]
      ]
      6 => array:8 [
        "identificador" => "tbl0020"
        "etiqueta" => "Table 4"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "detalles" => array:1 [
          0 => array:3 [
            "identificador" => "at4"
            "detalle" => "Table "
            "rol" => "short"
          ]
        ]
        "tabla" => array:2 [
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Count&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Percentage&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleBold">Paediatric patient</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Impairment in quality of life due to the disease</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>No impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">35&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Mild impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Moderate impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">17&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">26&#46;2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Significant impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">11&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">17&#46;0&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Impairment in quality of life due to modified diet &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">48&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">25&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">52&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleBold">Family members&#47;caregivers</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Main caregiver</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Mother&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">40&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">61&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Father&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">1&#46;5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Both&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">32&#46;3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Other&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">4&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Psychological and emotional support</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">4&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Need of an additional caregiver in addition to main caregiver</span><a class="elsevierStyleCrossRef" href="#tblfn0020"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">17&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">26&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Availability of additional caregiver &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">17&#41;</span><a class="elsevierStyleCrossRef" href="#tblfn0020"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">82&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Reduced work hours or stopped working &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">53&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">41&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">77&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Support from work &#40;n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">59&#41;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">26&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">44&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Family structure</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Two-parent household&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">55&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">84&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Separated parents&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Impact on quality of life due to the disease of the family member</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>No impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&#46;6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Mild impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">25&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">39&#46;1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Moderate impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">15&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">23&#46;4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Significant impairment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">14&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="char" valign="top">21&#46;9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab1932365.png"
              ]
            ]
          ]
          "notaPie" => array:1 [
            0 => array:3 [
              "identificador" => "tblfn0020"
              "etiqueta" => "a"
              "nota" => "<p class="elsevierStyleNotepara" id="npar0020">Variable analysed based on the previous answer&#46;</p>"
            ]
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0100" class="elsevierStyleSimplePara elsevierViewall">Perceived quality of life of patients with inborn errors of metabolism in the study and their parents or caregivers &#40;<span class="elsevierStyleItalic">N</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>65&#41;&#46;</p>"
        ]
      ]
    ]
    "bibliografia" => array:2 [
      "titulo" => "References"
      "seccion" => array:1 [
        0 => array:2 [
          "identificador" => "bibs0015"
          "bibliografiaReferencia" => array:39 [
            0 => array:3 [
              "identificador" => "bib0200"
              "etiqueta" => "1"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Semergen y las enfermedades raras"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "G&#46; Pombo Alles"
                            1 => "&#193;&#46; P&#233;rez Mart&#237;n"
                            2 => "M&#46;A&#46; Mora Menezo"
                            3 => "A&#46; Avellaneda Fern&#225;ndez"
                            4 => "E&#46; Guti&#233;rrez Delgado"
                            5 => "E&#46; Vejo Puente"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "Semergen"
                        "fecha" => "2008"
                        "volumen" => "34"
                        "paginaInicial" => "429"
                        "paginaFinal" => "471"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            1 => array:3 [
              "identificador" => "bib0205"
              "etiqueta" => "2"
              "referencia" => array:1 [
                0 => array:3 [
                  "comentario" => "&#91;accessed 31 Mar 2018&#93;&#46; Available in&#58; <a class="elsevierStyleInterRef" target="_blank" id="intr0010" href="http://www.juntadeandalucia.es/salud/sites/csalud/contenidos/Informacion_General/c_1_c_6_planes_estrategias/plan_de_atencion_a_personas_afectadas_por_enfermedades_raras">http&#58;&#47;&#47;www&#46;juntadeandalucia&#46;es&#47;salud&#47;sites&#47;csalud&#47;contenidos&#47;Informacion&#95;General&#47;c&#95;1&#95;c&#95;6&#95;planes&#95;estrategias&#47;plan&#95;de&#95;atencion&#95;a&#95;personas&#95;afectadas&#95;por&#95;enfermedades&#95;raras</a>"
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Plan de atenci&#243;n a personas afectadas por enfermedades raras 2008-2012"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "A&#46; Gonz&#225;lez-Meneses L&#243;pez"
                            1 => "J&#46; Benavides V&#237;lchez"
                            2 => "E&#46; Fern&#225;ndez de la Mota"
                            3 => "R&#46; Fern&#225;ndez L&#243;pez"
                            4 => "A&#46; Garc&#237;a Garc&#237;a"
                            5 => "P&#46; Garc&#237;a Rold&#225;n"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:2 [
                        "tituloSerie" => "Consejer&#237;a de Salud de la Junta de Andaluc&#237;a"
                        "fecha" => "2007"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            2 => array:3 [
              "identificador" => "bib0210"
              "etiqueta" => "3"
              "referencia" => array:1 [
                0 => array:3 [
                  "comentario" => "&#91;accessed 31 Mar 2018&#93;&#46; Available in&#58; <a class="elsevierStyleInterRef" target="_blank" id="intr0015" href="http://www.enfermedades-raras.org/">www&#46;enfermedades-raras&#46;org</a>"
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Estudio sobre situaci&#243;n de necesidades sociosanitarias de las personas con ER en Espa&#241;a&#46; Estudio ENSERio"
                      "autores" => array:1 [
                        0 => array:2 [
                          "colaboracion" => "Federaci&#243;n Espa&#241;ola de Enfermedades Raras &#40;FEDER&#41;"
                          "etal" => false
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Libro" => array:3 [
                        "fecha" => "2009"
                        "editorial" => "Obra Social Caja Madrid"
                        "editorialLocalizacion" => "Madrid"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            3 => array:3 [
              "identificador" => "bib0215"
              "etiqueta" => "4"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Australian families living with rare disease&#58; experiences of diagnosis&#44; health services use and needs for psychosocial support"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "M&#46; Anderson"
                            1 => "E&#46;J&#46; Elliott"
                            2 => "Y&#46;A&#46; Zurynski"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/1750-1172-8-22"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2013"
                        "volumen" => "8"
                        "paginaInicial" => "22"
                        "paginaFinal" => "30"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/23398775"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            4 => array:3 [
              "identificador" => "bib0220"
              "etiqueta" => "5"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Health-related quality of life following pediatric critical illness"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "F&#46; Aspesberro"
                            1 => "R&#46; Mangione-Smith"
                            2 => "J&#46;J&#46; Zimmerman"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/s00134-015-3780-7"
                      "Revista" => array:6 [
                        "tituloSerie" => "Intensive Care Med"
                        "fecha" => "2015"
                        "volumen" => "41"
                        "paginaInicial" => "1235"
                        "paginaFinal" => "1246"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/25851391"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            5 => array:3 [
              "identificador" => "bib0225"
              "etiqueta" => "6"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Impacto sociosanitario en pacientes con enfermedades raras &#40;estudio ERES&#41;"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:6 [
                            0 => "A&#46; Avellaneda Fern&#225;ndez"
                            1 => "M&#46; Layola"
                            2 => "M&#46; Izquierdo Mart&#237;nez"
                            3 => "M&#46; Guilera"
                            4 => "X&#46; Badia Llach"
                            5 => "J&#46;R&#46; Ram&#243;n"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "Med Clin &#40;Barc&#41;"
                        "fecha" => "2007"
                        "volumen" => "129"
                        "paginaInicial" => "646"
                        "paginaFinal" => "651"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            6 => array:3 [
              "identificador" => "bib0230"
              "etiqueta" => "7"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Do the SF-36 and WHOQOL-BREF measure the same constructs&#63; Evidence from the Taiwan population"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "I&#46;C&#46; Huang"
                            1 => "A&#46;W&#46; Wu"
                            2 => "C&#46; Frangakis"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/s11136-005-8486-9"
                      "Revista" => array:6 [
                        "tituloSerie" => "Qual Life Res"
                        "fecha" => "2006"
                        "volumen" => "15"
                        "paginaInicial" => "15"
                        "paginaFinal" => "24"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/16411027"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            7 => array:3 [
              "identificador" => "bib0235"
              "etiqueta" => "8"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Aspectos estad&#237;sticos del Cuestionario de Calidad de Vida relacionada con salud Short Form-36 &#40;SF-36&#41;"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:2 [
                            0 => "I&#46; Arostegui Madariaga"
                            1 => "V&#46; N&#250;&#241;ez-Ant&#243;n"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "Estad&#237;stica Espa&#241;ola"
                        "fecha" => "2008"
                        "volumen" => "50"
                        "paginaInicial" => "147"
                        "paginaFinal" => "192"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            8 => array:3 [
              "identificador" => "bib0240"
              "etiqueta" => "9"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Nutritional status and health-related life quality in school children from the southeast of Spain"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "A&#46; G&#225;lvez"
                            1 => "A&#46; Rosa"
                            2 => "E&#46; Garc&#237;a-Cant&#243;"
                            3 => "P&#46;L&#46; Rodr&#237;guez"
                            4 => "J&#46;J&#46; P&#233;rez-Soto"
                            5 => "L&#46; Tarraga"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.3305/nh.2015.31.2.8468"
                      "Revista" => array:6 [
                        "tituloSerie" => "Nutr Hosp"
                        "fecha" => "2014"
                        "volumen" => "31"
                        "paginaInicial" => "737"
                        "paginaFinal" => "743"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/25617557"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            9 => array:3 [
              "identificador" => "bib0245"
              "etiqueta" => "10"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Application of the WHOQOL-100 for the assessment of quality of life of adult patients with inherited metabolic diseases"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "C&#46; Cazzorla"
                            1 => "M&#46; del Rizzo"
                            2 => "P&#46; Burgard"
                            3 => "C&#46; Zanco"
                            4 => "A&#46; Bordugo"
                            5 => "A&#46;B&#46; Burlina"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.ymgme.2012.02.008"
                      "Revista" => array:6 [
                        "tituloSerie" => "Mol Genet Metab"
                        "fecha" => "2012"
                        "volumen" => "106"
                        "paginaInicial" => "25"
                        "paginaFinal" => "30"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/22398241"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            10 => array:3 [
              "identificador" => "bib0250"
              "etiqueta" => "11"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Quality of Life &#40;QoL&#41; assessment in a cohort of patients with phenyllketonuria"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "C&#46; Cazzorla"
                            1 => "L&#46; Cegolon"
                            2 => "A&#46;P&#46; Burlina"
                            3 => "A&#46; Celato"
                            4 => "P&#46; Massa"
                            5 => "L&#46; Giordano"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/1471-2458-14-1243"
                      "Revista" => array:6 [
                        "tituloSerie" => "BMC Public Health"
                        "fecha" => "2014"
                        "volumen" => "14"
                        "paginaInicial" => "1243"
                        "paginaFinal" => "1251"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/25471331"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            11 => array:3 [
              "identificador" => "bib0255"
              "etiqueta" => "12"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Psychiatric symptoms and disorders in phenylketonuria"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "V&#46;L&#46; Brumm"
                            1 => "D&#46; Bilder"
                            2 => "S&#46;E&#46; Waisbren"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.ymgme.2009.10.182"
                      "Revista" => array:7 [
                        "tituloSerie" => "Mol Genet Metab"
                        "fecha" => "2010"
                        "volumen" => "99"
                        "numero" => "Suppl&#46; 1"
                        "paginaInicial" => "S59"
                        "paginaFinal" => "S63"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/20123472"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            12 => array:3 [
              "identificador" => "bib0260"
              "etiqueta" => "13"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Psychosocial aspects of PKU&#58; hidden disabilities&#8211;a review"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "J&#46;K&#46; Gentile"
                            1 => "A&#46;E&#46; Ten Hoedt"
                            2 => "A&#46;M&#46; Bosch"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.ymgme.2009.10.183"
                      "Revista" => array:7 [
                        "tituloSerie" => "Mol Genet Metab"
                        "fecha" => "2010"
                        "volumen" => "99"
                        "numero" => "Suppl&#46; 1"
                        "paginaInicial" => "S64"
                        "paginaFinal" => "S67"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/20123473"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            13 => array:3 [
              "identificador" => "bib0265"
              "etiqueta" => "14"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Social outcome in treated individuals with inherited metabolic disorders&#58; UK study"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "M&#46; Bhat"
                            1 => "C&#46; Haase"
                            2 => "P&#46;J&#46; Lee"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/s10545-005-0159-x"
                      "Revista" => array:6 [
                        "tituloSerie" => "J Inherit Metab Dis"
                        "fecha" => "2005"
                        "volumen" => "28"
                        "paginaInicial" => "825"
                        "paginaFinal" => "830"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/16435174"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            14 => array:3 [
              "identificador" => "bib0270"
              "etiqueta" => "15"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Quality of life among parents of children with phenylketonuria &#40;PKU&#41;"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "A&#46; Fidika"
                            1 => "C&#46; Salewski"
                            2 => "L&#46; Lutz Goldbeck"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/1477-7525-11-54"
                      "Revista" => array:7 [
                        "tituloSerie" => "Health Qual Life Outcomes"
                        "fecha" => "2013"
                        "volumen" => "11"
                        "paginaInicial" => "54"
                        "paginaFinal" => "62"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/23537423"
                            "web" => "Medline"
                          ]
                        ]
                        "itemHostRev" => array:3 [
                          "pii" => "S0022510X1733767X"
                          "estado" => "S300"
                          "issn" => "0022510X"
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            15 => array:3 [
              "identificador" => "bib0275"
              "etiqueta" => "16"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Living with classical galactosemia&#58; health-related quality of life consequences"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:6 [
                            0 => "A&#46;M&#46; Bosch"
                            1 => "M&#46;A&#46; Grootenhuis"
                            2 => "H&#46;D&#46; Bakker"
                            3 => "H&#46;S&#46; Heijmans"
                            4 => "F&#46;A&#46; Wijburg"
                            5 => "B&#46;F&#46; Last"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "Pediatrics"
                        "fecha" => "2004"
                        "volumen" => "113"
                        "paginaInicial" => "e423"
                        "paginaFinal" => "e428"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/15121984"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            16 => array:3 [
              "identificador" => "bib0280"
              "etiqueta" => "17"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Parents&#8217; experiences of living with&#44; and caring for children&#44; adolescents and young adults with mucopolysaccharidosis &#40;MPS&#41;"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:2 [
                            0 => "S&#46; Somanadhan"
                            1 => "P&#46;J&#46; Larkin"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/s13023-016-0521-0"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2016"
                        "volumen" => "11"
                        "paginaInicial" => "138"
                        "paginaFinal" => "151"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/27724940"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            17 => array:3 [
              "identificador" => "bib0285"
              "etiqueta" => "18"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "A&#46;M&#46; Bosch"
                            1 => "A&#46; Burlina"
                            2 => "A&#46; Cunningham"
                            3 => "E&#46; Bettiol"
                            4 => "F&#46; Moreau-Stucker"
                            5 => "E&#46; Koledova"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/s13023-015-0294-x"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2015"
                        "volumen" => "10"
                        "paginaInicial" => "80"
                        "paginaFinal" => "93"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/26084935"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            18 => array:3 [
              "identificador" => "bib0290"
              "etiqueta" => "19"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Enfermedades raras&#46; Concepto&#44; epidemiolog&#237;a y situaci&#243;n actual en Espa&#241;a"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:5 [
                            0 => "M&#46; Posada de la Paz"
                            1 => "C&#46; Mart&#237;n Arribas"
                            2 => "A&#46; Ram&#237;rez"
                            3 => "A&#46; Villaverde"
                            4 => "I&#46; Abaitua"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "An Sist Sanit Navar"
                        "fecha" => "2008"
                        "volumen" => "31"
                        "paginaInicial" => "9"
                        "paginaFinal" => "20"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/18953369"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            19 => array:3 [
              "identificador" => "bib0295"
              "etiqueta" => "20"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Australian children living with rare diseases&#58; experiences of diagnosis and perceived consequences of diagnostic delays"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "Y&#46; Zurynski"
                            1 => "M&#46; Deverell"
                            2 => "T&#46; Dalkeith"
                            3 => "S&#46; Johnson"
                            4 => "J&#46; Christodoulou"
                            5 => "H&#46; Leonard"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/s13023-017-0622-4"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2017"
                        "volumen" => "12"
                        "paginaInicial" => "68"
                        "paginaFinal" => "76"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/28399928"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            20 => array:3 [
              "identificador" => "bib0300"
              "etiqueta" => "21"
              "referencia" => array:1 [
                0 => array:1 [
                  "referenciaCompleta" => "European Organisation for Rare Diseases&#44; The voice of 12&#44;000 patients&#58; experiences and expectations of rare disease patients on diagnosis and care in Europe&#46; 2009 &#91;accessed 22 Oct 2017&#93;&#46; Available in&#58; <a id="intr0020" class="elsevierStyleInterRef" href="http://www.eurordis.org/IMG/pdf/voice_12000_%20patients/EURORDISCARE_FULLBOOKr.pdf">http&#58;&#47;&#47;www&#46;eurordis&#46;org&#47;IMG&#47;pdf&#47;voice&#95;12000&#95; patients&#47;EURORDISCARE&#95;FULLBOOKr&#46;pdf</a>"
                ]
              ]
            ]
            21 => array:3 [
              "identificador" => "bib0305"
              "etiqueta" => "22"
              "referencia" => array:1 [
                0 => array:3 [
                  "comentario" => "&#91;accessed 31 Mar 2018&#93;&#46; Available in&#58; <a class="elsevierStyleInterRef" target="_blank" id="intr0025" href="https://www.raredisease.org.uk/">https&#58;&#47;&#47;www&#46;raredisease&#46;org&#46;uk&#47;</a>"
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The rare reality &#8211; an insight into the patient and family experience of rare disease"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:1 [
                            0 => "E&#46; Muir"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:2 [
                        "tituloSerie" => "Rare Disease UK"
                        "fecha" => "2016"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            22 => array:3 [
              "identificador" => "bib0310"
              "etiqueta" => "23"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The rare and undiagnosed diseases diagnostic service &#8211; application of massively parallel sequencing in a state-wide clinical service"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "G&#46; Baynam"
                            1 => "N&#46; Pachter"
                            2 => "F&#46; McKenzie"
                            3 => "S&#46; Townshend"
                            4 => "J&#46; Slee"
                            5 => "C&#46; Kiraly-Borri"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2016"
                        "volumen" => "11"
                        "paginaInicial" => "77"
                        "paginaFinal" => "83"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            23 => array:3 [
              "identificador" => "bib0315"
              "etiqueta" => "24"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The NIH Undiagnosed Diseases Program and Network&#58; applications to modern medicine"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "W&#46;A&#46; Gahl"
                            1 => "J&#46;J&#46; Mulvihill"
                            2 => "C&#46; Toro"
                            3 => "T&#46;C&#46; Markello"
                            4 => "A&#46;L&#46; Wise"
                            5 => "R&#46;B&#46; Ramoni"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.ymgme.2016.01.007"
                      "Revista" => array:6 [
                        "tituloSerie" => "Mol Genet Metab"
                        "fecha" => "2016"
                        "volumen" => "117"
                        "paginaInicial" => "393"
                        "paginaFinal" => "400"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/26846157"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            24 => array:3 [
              "identificador" => "bib0320"
              "etiqueta" => "25"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Rare diseases social epidemiology&#58; analysis of inequalities"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:2 [
                            0 => "A&#46; Kole"
                            1 => "F&#46; Faurisson"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/978-90-481-9485-8_14"
                      "Revista" => array:6 [
                        "tituloSerie" => "Adv Exp Med Biol"
                        "fecha" => "2010"
                        "volumen" => "686"
                        "paginaInicial" => "223"
                        "paginaFinal" => "250"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/20824449"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            25 => array:3 [
              "identificador" => "bib0325"
              "etiqueta" => "26"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Requirements for a minimum standard of care for phenylketonuria&#58; the patients&#8217; perspective"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:5 [
                            0 => "T&#46;S&#46; Hagedorn"
                            1 => "P&#46; van Berkel"
                            2 => "G&#46; Hammerschmidt"
                            3 => "M&#46; Lhot&#225;kov&#225;"
                            4 => "R&#46;P&#46; Saludes"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/1750-1172-8-191"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2013"
                        "volumen" => "8"
                        "paginaInicial" => "191"
                        "paginaFinal" => "198"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/24341788"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            26 => array:3 [
              "identificador" => "bib0330"
              "etiqueta" => "27"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Family social status and dietary adherence of patients with phenylketonuria"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "M&#46; Alaei"
                            1 => "G&#46; Asadzadeh-Totonchi"
                            2 => "L&#46; Gachkar"
                            3 => "S&#46; Farivar"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "Iran J Pediatr"
                        "fecha" => "2011"
                        "volumen" => "21"
                        "paginaInicial" => "379"
                        "paginaFinal" => "384"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/23056817"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            27 => array:3 [
              "identificador" => "bib0335"
              "etiqueta" => "28"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The influence of socioeconomic and cultural factors on compliance with dietary treatment&#44; and growth and development in PKU children"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:5 [
                            0 => "I&#46; Ozalp"
                            1 => "T&#46; Coskun"
                            2 => "A&#46; Tokatli"
                            3 => "L&#46; Vanli"
                            4 => "Y&#46; Kalbiye"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "J Inherit Metab Dis"
                        "fecha" => "1998"
                        "volumen" => "21"
                        "numero" => "Suppl&#46; 3"
                        "paginaInicial" => "7"
                        "paginaFinal" => "8"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            28 => array:3 [
              "identificador" => "bib0340"
              "etiqueta" => "29"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The impact of Hunter syndrome &#40;mucopolysaccharidosis type II&#41; on health-related quality of life"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:5 [
                            0 => "M&#46; Raluy-Callado"
                            1 => "W&#46;H&#46; Chen"
                            2 => "D&#46;A&#46; Whiteman"
                            3 => "J&#46; Fang"
                            4 => "I&#46; Wiklund"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/1750-1172-8-101"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2013"
                        "volumen" => "8"
                        "paginaInicial" => "101"
                        "paginaFinal" => "110"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/23837440"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            29 => array:3 [
              "identificador" => "bib0345"
              "etiqueta" => "30"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Psychiatric disorders in adolescent and young adult patients with phenylketonuria"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:6 [
                            0 => "F&#46; Manti"
                            1 => "F&#46; Nardecchia"
                            2 => "F&#46; Chiarotti"
                            3 => "C&#46; Carducci"
                            4 => "C&#46; Carducci"
                            5 => "V&#46; Leuzzi"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.ymgme.2015.11.006"
                      "Revista" => array:6 [
                        "tituloSerie" => "Mol Genet Metab"
                        "fecha" => "2016"
                        "volumen" => "117"
                        "paginaInicial" => "12"
                        "paginaFinal" => "18"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/26655635"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            30 => array:3 [
              "identificador" => "bib0350"
              "etiqueta" => "31"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Living with phenylketonuria&#58; perspectives of patients and their families"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "C&#46; Bilginsoy"
                            1 => "N&#46; Waitzman"
                            2 => "C&#46;O&#46; Leonard"
                            3 => "S&#46;L&#46; Ernst"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/s10545-005-4478-8"
                      "Revista" => array:6 [
                        "tituloSerie" => "J Inherit Metab Dis"
                        "fecha" => "2005"
                        "volumen" => "28"
                        "paginaInicial" => "639"
                        "paginaFinal" => "649"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/16151894"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            31 => array:3 [
              "identificador" => "bib0355"
              "etiqueta" => "32"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Metabolic Diet App Suite for inborn errors of amino acid metabolism"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "G&#46; Ho"
                            1 => "K&#46; Ueda"
                            2 => "R&#46;F&#46; Houben"
                            3 => "J&#46; Joa"
                            4 => "A&#46; Giezen"
                            5 => "B&#46; Cheng"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1016/j.ymgme.2015.12.007"
                      "Revista" => array:6 [
                        "tituloSerie" => "Mol Genet Metab"
                        "fecha" => "2016"
                        "volumen" => "117"
                        "paginaInicial" => "322"
                        "paginaFinal" => "327"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/26748688"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            32 => array:3 [
              "identificador" => "bib0360"
              "etiqueta" => "33"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Experiences of caregivers of children with inherited metabolic diseases&#58; a qualitative study"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:6 [
                            0 => "S&#46; Siddiq"
                            1 => "B&#46;J&#46; Wilson"
                            2 => "I&#46;D&#46; Graham"
                            3 => "M&#46; Lamoureux"
                            4 => "S&#46;D&#46; Khangura"
                            5 => "K&#46; Tingley"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1186/s13023-016-0548-2"
                      "Revista" => array:6 [
                        "tituloSerie" => "Orphanet J Rare Dis"
                        "fecha" => "2016"
                        "volumen" => "11"
                        "paginaInicial" => "168"
                        "paginaFinal" => "177"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/27927250"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            33 => array:3 [
              "identificador" => "bib0365"
              "etiqueta" => "34"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Das Ulmer Lebensqualit&#228;ts-Inventar f&#252;r Eltern chronisch kranker Kinder &#40;ULQIE&#41;&#58; Entwicklung und psychometrische Eigenschaften&#47;ULQIE&#58; a quality-of-life inventory for parents of chronically ill children"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:2 [
                            0 => "L&#46; Goldbeck"
                            1 => "M&#46; Storck"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "Z Klin Psychol Psychother"
                        "fecha" => "2002"
                        "volumen" => "31"
                        "paginaInicial" => "31"
                        "paginaFinal" => "39"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            34 => array:3 [
              "identificador" => "bib0370"
              "etiqueta" => "35"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Parenting a child with phenylketonuria or galactosemia&#58; implications for health-related quality of life"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "A&#46;E&#46; Ten Hoedt"
                            1 => "H&#46; Maurice-Stam"
                            2 => "C&#46;C&#46; Boelen"
                            3 => "M&#46;E&#46; Rubio-Gozalbo"
                            4 => "F&#46;J&#46; van Spronsen"
                            5 => "F&#46;A&#46; Wijburg"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "J Inherit Metab Dis"
                        "fecha" => "2011"
                        "volumen" => "34"
                        "paginaInicial" => "391"
                        "paginaFinal" => "398"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            35 => array:3 [
              "identificador" => "bib0375"
              "etiqueta" => "36"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Family conditions and dietary control in phenylketonuria"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "G&#46;M&#46; Olsson"
                            1 => "S&#46;M&#46; Montgomery"
                            2 => "J&#46; Alm"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/s10545-007-0493-2"
                      "Revista" => array:6 [
                        "tituloSerie" => "J Inherit Metab Dis"
                        "fecha" => "2007"
                        "volumen" => "30"
                        "paginaInicial" => "708"
                        "paginaFinal" => "715"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/17570079"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            36 => array:3 [
              "identificador" => "bib0380"
              "etiqueta" => "37"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The reality of dietary compliance in the management of phenylketonuria"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "A&#46; MacDonald"
                            1 => "H&#46; Gokmen-Ozel"
                            2 => "M&#46; van Rijn"
                            3 => "P&#46; Burgard"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1007/s10545-010-9073-y"
                      "Revista" => array:6 [
                        "tituloSerie" => "J Inherit Metab Dis"
                        "fecha" => "2010"
                        "volumen" => "33"
                        "paginaInicial" => "665"
                        "paginaFinal" => "670"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/20373144"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            37 => array:3 [
              "identificador" => "bib0385"
              "etiqueta" => "38"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Implications of resolving the diagnosis of PKU for parents and children"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "B&#46; Lord"
                            1 => "J&#46; Ungerer"
                            2 => "C&#46; Wastell"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "J Pediatr Psychol"
                        "fecha" => "2008"
                        "volumen" => "33"
                        "paginaInicial" => "855"
                        "paginaFinal" => "866"
                      ]
                    ]
                  ]
                ]
              ]
            ]
            38 => array:3 [
              "identificador" => "bib0390"
              "etiqueta" => "39"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Predicting health-related quality of life of parents of children with inherited metabolic diseases"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:6 [
                            0 => "J&#46; Hatzmann"
                            1 => "M&#46;J&#46; Valstar"
                            2 => "A&#46;M&#46; Bosch"
                            3 => "F&#46;A&#46; Wijburg"
                            4 => "H&#46;S&#46; Heymans"
                            5 => "M&#46;A&#46; Grootenhuis"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1111/j.1651-2227.2009.01269.x"
                      "Revista" => array:6 [
                        "tituloSerie" => "Acta Paediatr"
                        "fecha" => "2009"
                        "volumen" => "98"
                        "paginaInicial" => "1205"
                        "paginaFinal" => "1210"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/19397532"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
          ]
        ]
      ]
    ]
  ]
  "idiomaDefecto" => "en"
  "url" => "/23412879/0000009000000001/v1_201901020610/S2341287918302035/v1_201901020610/en/main.assets"
  "Apartado" => array:4 [
    "identificador" => "26005"
    "tipo" => "SECCION"
    "en" => array:2 [
      "titulo" => "Original Articles"
      "idiomaDefecto" => true
    ]
    "idiomaDefecto" => "en"
  ]
  "PDF" => "https://static.elsevier.es/multimedia/23412879/0000009000000001/v1_201901020610/S2341287918302035/v1_201901020610/en/main.pdf?idApp=UINPBA00005H&text.app=https://analesdepediatria.org/"
  "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S2341287918302035?idApp=UINPBA00005H"
]