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Letter to the Editor
The transfer of neuropaediatrics to adult medicine
La transferencia de neuropediatría a medicina de adultos
J. López Pisóna,b,
Corresponding author
jlopezpi@salud.aragon.es

Corresponding author.
, L. Monge Galindoa,b, R. Pérez Delgadoa,b, M. Lafuente Hidalgoa,b, P. Abenia Usona, M.C. García Jiméneza,c, J.L. Peña Seguraa,b
a Sección de Neuropediatría, Hospital Universitario Miguel Servet, Zaragoza, Spain
b Instituto Aragonés de Ciencias de la Salud, Zaragoza, Spain
c Sección de Metabolismo, Hospital Universitario Miguel Servet, Zaragoza, Spain
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Neuropaediatricians manage patients from the neonatal period through adolescence and youth&#46; Whenever their patients are not discharged&#44; sooner or later they must be transferred to adult physicians&#58; family physicians&#44; neurologists&#44; neurosurgeons or other specialists&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">This transfer is necessary because neuropaediatricians are experts in children and adolescents but not in adults&#46; Moreover&#44; it is inappropriate for adults to be treated in paediatric wards&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">However&#44; this transfer can be traumatic because&#44; in some cases&#44; a relationship has existed for many years&#46; This includes both the way of working and the affection established between neuropaediatricians and patients and their families&#44; who must adapt to new environments and new professionals&#46; Furthermore&#44; neurologists are not always prepared to deal with some neuropaediatric diseases&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">The issue of transfers was raised for the first time in the United States&#44; at a convention which took place in 1984&#44; as a result of the significant increase in survival in children with chronic and disabling conditions during the 1970s and 1980s&#46; Subsequently&#44; there have been 2 other conventions in 1989 and 2001&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">A search in PubMed&#44; dated February 13th&#44; 2011&#44; for reviews containing the terms &#8220;<span class="elsevierStyleItalic">pediatric to adult transition</span>&#8221;&#44; returned 130 articles &#40;of which only 8 were from the 20th century&#41; related to cystic fibrosis&#44; cancer&#44; transplants&#44; congenital heart disease&#44; diabetes mellitus&#44; inflammatory bowel disease&#44; chronic kidney disease&#44; growth hormone deficiency and neurological and neurosurgical pathology&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">In total&#44; 12 articles made reference to neurological problems concerning unspecified neurological diseases&#44;<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> miopathies&#44;<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a> hydrocephalus&#44;<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> CNS tumours&#44;<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> attention deficit hyperactivity disorder &#40;ADHD&#41;&#44;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a> neurosurgical pathology&#44;<a class="elsevierStyleCrossRefs" href="#bib0035"><span class="elsevierStyleSup">7&#8211;9</span></a> brain trauma&#44;<a class="elsevierStyleCrossRef" href="#bib0050"><span class="elsevierStyleSup">10</span></a> phacomatosis and genetically determined tumours&#44;<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a> spina bifida<a class="elsevierStyleCrossRefs" href="#bib0060"><span class="elsevierStyleSup">12&#44;13</span></a> and cerebral palsy&#46;<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> In addition&#44; 1 review made reference to inborn errors of metabolism&#44;<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a> many of which have a neurological effect&#46; Until recently&#44; their diagnosis and follow-up corresponded to paediatricians&#44; but&#44; at present&#44; adult services &#40;especially neurology and internal medicine&#41; must also adapt to them&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">All the articles agree that very little progress has been made and highlight a number of barriers for a successful transition&#58; lack of coordination between paediatric and adult units&#44; problems related to parents&#44; family and patient resistance&#44; lack of planning and lack of institutional support&#46;</p><p id="par0040" class="elsevierStylePara elsevierViewall">Neuropaediatricians deal with&#58;<ul class="elsevierStyleList" id="lis0005"><li class="elsevierStyleListItem" id="lsti0005"><span class="elsevierStyleLabel">&#8211;</span><p id="par0045" class="elsevierStylePara elsevierViewall">Problems of low fragility and high prevalence&#44; such as headaches&#44; some non-epileptic paroxysmal disorders&#44; some epilepsies and ADHD&#46;</p></li><li class="elsevierStyleListItem" id="lsti0010"><span class="elsevierStyleLabel">&#8211;</span><p id="par0050" class="elsevierStylePara elsevierViewall">Problems of high fragility &#40;taken into account separately&#44; although together they represent a large number of patients&#41;&#44; lower prevalence&#44; and with a high personal&#44; family and social impact&#44; such as pathological psychomotor retardation &#40;including autism spectrum disorders and mental retardation&#41;&#44; cerebral palsy&#44; tumoural pathology&#44; metabolic diseases&#44; neuromuscular unit diseases&#44; spinal disorders including myelomeningocele&#44; refractory epilepsy and neurocutaneous syndromes&#46; Over 8&#37; of our patients suffer rare diseases &#40;with an established diagnosis&#41; and over 8&#37; suffer epilepsies&#44; of which over 20&#37; are refractory&#46;<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">16</span></a></p></li></ul></p><p id="par0055" class="elsevierStylePara elsevierViewall">We reviewed our experience at Hospital Miguel Servet in Zaragoza for a period of 20 years&#44; from May 1990 to November 2010&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#8211;18</span></a> The paediatric neurology database contained 13<span class="elsevierStyleHsp" style=""></span>268 patients from that period&#44; of which 855 &#40;6&#46;4&#37;&#41; were over 14 years of age at the time of last modification&#58; 361 were aged 14 years&#44; 170 were aged 15 years&#44; 103 were aged 16 years&#44; 86 were aged 17 years&#44; 72 were aged 18 years and 62 were aged 19 to 28 years&#46; Of these 855 patients&#44; 274 &#40;32&#37;&#41; continued to be managed by the neuropaediatric unit&#44; 11 &#40;1&#46;2&#37;&#41; died&#44; 353 &#40;41&#46;2&#37;&#41; were discharged &#40;that is&#44; transferred to the care of their family doctor&#41; and 151 &#40;17&#46;6&#37;&#41; were transferred to adult neurology units&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">The pathologies suffered by patients who were transferred to adult neurology units were 108 cases of epilepsy and 22 neuromuscular unit diseases &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#46; The diagnoses of the 353 children who were discharged and&#44; therefore&#44; transferred to their family doctors&#44; included 35 cases of mental retardation&#44; 26 cases of cerebral palsy&#44; 18 cases of ADHD&#44; 6 cases of type 1 neurofibromatosis and 2 cases of autism spectrum disorders&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0065" class="elsevierStylePara elsevierViewall">The neurology and neuropaediatric services and the managers responsible should make an effort to improve the transfer through a transition process&#44; which could be established through different approaches&#46; There are some pathologies which can and should be managed by paediatricians and primary care physicians&#44; others which should be transferred to neurosurgery and&#44; perhaps&#44; psychiatry services&#44; and yet others which should be transferred to neurology services&#46;</p><p id="par0070" class="elsevierStylePara elsevierViewall">Currently&#44; there is no dispute about the need for experts in 2 age groups&#58; neuropaediatricians and neurologists&#46; The figure of an expert in the transition age group &#40;and&#44; therefore&#44; &#8220;expert in transition&#8221;&#41; could also be very useful&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">An &#8220;expert in transition&#8221; would be a prime tool to implement communication and teamwork between neuropaediatricians&#44; neurologists and neurosurgeons&#46; All have much to learn from each other and communication should be fostered through joint meetings and the use of information and communication technology &#40;especially e-mail&#41;&#46;</p><p id="par0080" class="elsevierStylePara elsevierViewall">The keys to a successful transition are&#58;<ul class="elsevierStyleList" id="lis0010"><li class="elsevierStyleListItem" id="lsti0015"><span class="elsevierStyleLabel">&#8211;</span><p id="par0085" class="elsevierStylePara elsevierViewall">The transfer should be announced previously&#46;</p></li><li class="elsevierStyleListItem" id="lsti0020"><span class="elsevierStyleLabel">&#8211;</span><p id="par0090" class="elsevierStylePara elsevierViewall">There should be a perception of continuity by users&#44; of being part of the same team&#44; with the same criteria and work methodology&#46;</p></li><li class="elsevierStyleListItem" id="lsti0025"><span class="elsevierStyleLabel">&#8211;</span><p id="par0095" class="elsevierStylePara elsevierViewall">Planning&#46;</p></li><li class="elsevierStyleListItem" id="lsti0030"><span class="elsevierStyleLabel">&#8211;</span><p id="par0100" class="elsevierStylePara elsevierViewall">Institutional support&#46;</p></li></ul></p><p id="par0105" class="elsevierStylePara elsevierViewall">Neurology services in Spain generally have more neurologists than neuropaediatric units&#46; Neuropaediatricians are too few to share the burden of healthcare and permanent update in very diverse fields &#40;many of them complex and with continuous advances&#41;&#46; Neurology services could share a neurologist with neuropaediatric units &#40;&#8220;part-time donation&#8221;&#41;&#44; ideally one suitable as a neuropaediatrician after 2 years of training at a neuropaediatric unit&#46; This neurologist&#8211;neuropaediatrician could alternate between healthcare&#44; teaching&#44; neurology research and management&#44; neuropaediatric and &#8220;transition&#8221; duties&#46;</p><p id="par0110" class="elsevierStylePara elsevierViewall">In conclusion&#44; neuropaediatric patients should be transferred to adult physicians between the ages of 14 and 18 years&#44; ideally through a transition process led by a neurologist&#8211;neuropaediatrician&#46; This professional would rapidly become an expert in such transitions and a key figure in the communication between neurology and neuropaediatric units&#44; as well as in the training of neurologists for problems which they are not used to&#44; including neurocutaneous syndromes&#44; mental retardation&#44; autism spectrum disorders&#44; childhood cerebral palsy&#44; ADHD and metabolic diseases&#46; Ultimately&#44; quality and continuity of care would improve to the benefit of patients&#44; their families and professionals&#44; who would be satisfied by the improvement of their service&#46;</p></span>"
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        "nota" => "<p class="elsevierStyleNotepara">Please cite this article as&#58; L&#243;pez Pis&#243;n J&#44; et al&#46; La transferencia de neuropediatr&#237;a a medicina de adultos&#46; Neurolog&#237;a&#46; 2012&#59;27&#58;183&#8211;5&#46;</p>"
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          "leyenda" => "<p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">SMA&#58; spinal muscular atrophy&#46;</p>"
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                  \t\t\t\t"><span class="elsevierStyleBold">Total patients transferred to adult neurology</span>&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Epilepsies</span>&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Partial symptomatic&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">54&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Generalised idiopathic&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Cryptogenic&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">9&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Partial cryptogenic&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">7&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Epileptic encephalopathy&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t">8&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Neuromuscular unit diseases</span>&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">22&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Sensorimotor hereditary neuropathies&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">6&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="left" valign="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Dystrophinopathies&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Type II SMA&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Friedreich ataxia&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Congenital muscular dystrophy&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
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          "en" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Diagnoses of the 151 patients transferred from a neuropaediatric unit to an adult neurology service&#46;</p>"
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      "titulo" => "References"
      "seccion" => array:1 [
        0 => array:2 [
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                0 => array:2 [
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                    0 => array:2 [
                      "titulo" => "Introduction"
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                        0 => array:2 [
                          "etal" => false
                          "autores" => array:1 [
                            0 => "R&#46;W&#46; Blum"
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                    0 => array:1 [
                      "Revista" => array:5 [
                        "tituloSerie" => "Pediatricas"
                        "fecha" => "2002"
                        "volumen" => "110"
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                        "paginaFinal" => "1303"
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              "identificador" => "bib0010"
              "etiqueta" => "2"
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                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Carry-over &#8211; from the standpoint of adult neurology"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:2 [
                            0 => "M&#46; Nishizawa"
                            1 => "R&#46; Koike"
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                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "Nippon Rinsho"
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                        "paginaFinal" => "154"
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                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/20077809"
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              "identificador" => "bib0015"
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                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Care continuity for patients with myopathy during transition of childhood to adulthood"
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                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "M&#46; Yoshioka"
                            1 => "M&#46; Tsuji"
                            2 => "M&#46; Kawamoto"
                            3 => "N&#46; Kouhara"
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                      ]
                    ]
                  ]
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                    0 => array:1 [
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              "identificador" => "bib0020"
              "etiqueta" => "4"
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                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Who will care for me next&#63; Transitioning to adulthood with hydrocephalus"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:6 [
                            0 => "T&#46;D&#46; Simon"
                            1 => "S&#46; Lamb"
                            2 => "N&#46;A&#46; Murphy"
                            3 => "B&#46; Hom"
                            4 => "M&#46;L&#46; Walker"
                            5 => "E&#46; Clark"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1542/peds.2009-1662"
                      "Revista" => array:6 [
                        "tituloSerie" => "Pediatrics"
                        "fecha" => "2009"
                        "volumen" => "124"
                        "paginaInicial" => "1469"
                        "paginaFinal" => "1470"
                        "link" => array:1 [
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                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/19858158"
                            "web" => "Medline"
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                ]
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es en pt

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