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Couce, M. del Toro, M.C. García-Jiménez, L. Gutierrez-Solana, Á. Hermida-Ameijeiras, M. López-Rodríguez, J. Pérez-López, M.Á. Torralba" "autores" => array:8 [ 0 => array:4 [ "nombre" => "M.L." "apellidos" => "Couce" "email" => array:1 [ 0 => "maria.luz.couce.pico@sergas.es" ] "referencia" => array:2 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff0005" ] 1 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">*</span>" "identificador" => "cor0005" ] ] ] 1 => array:3 [ "nombre" => "M." "apellidos" => "del Toro" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "aff0010" ] ] ] 2 => array:3 [ "nombre" => "M.C." "apellidos" => "García-Jiménez" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "aff0015" ] ] ] 3 => array:3 [ "nombre" => "L." "apellidos" => "Gutierrez-Solana" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">d</span>" "identificador" => "aff0020" ] ] ] 4 => array:3 [ "nombre" => "Á." "apellidos" => "Hermida-Ameijeiras" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">e</span>" "identificador" => "aff0025" ] ] ] 5 => array:3 [ "nombre" => "M." "apellidos" => "López-Rodríguez" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">f</span>" "identificador" => "aff0030" ] ] ] 6 => array:3 [ "nombre" => "J." "apellidos" => "Pérez-López" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">g</span>" "identificador" => "aff0035" ] ] ] 7 => array:3 [ "nombre" => "M.Á." "apellidos" => "Torralba" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">h</span>" "identificador" => "aff0040" ] ] ] ] "afiliaciones" => array:8 [ 0 => array:3 [ "entidad" => "Unidad de Diagnóstico y Tratamiento de Enfermedades Metabólicas Congénitas, Servicio de Neonatología, Departamento de Pediatría, Hospital Clínico Universitario de Santiago de Compostela, IDIS, CIBERER, Universidad de Santiago, Santiago de Compostela, A Coruña, Spain" "etiqueta" => "a" "identificador" => "aff0005" ] 1 => array:3 [ "entidad" => "Servicio de Neurología Pediátrica, Hospital Universitario Vall d’Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain" "etiqueta" => "b" "identificador" => "aff0010" ] 2 => array:3 [ "entidad" => "Unidad de Metabolopatías, Servicio Pediatría, Hospital Universitario Miguel Servet, Instituto Aragonés de Ciencias de la Salud, Zaragoza, Spain" "etiqueta" => "c" "identificador" => "aff0015" ] 3 => array:3 [ "entidad" => "Servicio de Neuropediatría, Hospital Niño Jesús, Madrid, Spain" "etiqueta" => "d" "identificador" => "aff0020" ] 4 => array:3 [ "entidad" => "Unidad de Enfermedades Metabólicas Congénitas, Servicio de Medicina Interna, Hospital Clínico Universitario de Santiago de Compostela, Santiago de Compostela, A Coruña, Spain" "etiqueta" => "e" "identificador" => "aff0025" ] 5 => array:3 [ "entidad" => "Servicio de Medicina Interna, Hospital Central de la Cruz Roja, Madrid, Spain" "etiqueta" => "f" "identificador" => "aff0030" ] 6 => array:3 [ "entidad" => "Errores Congénitos del Metabolismo del Adulto, Unidad de Enfermedades Minoritarias, Hospital Universitario Vall d’Hebron, Barcelona, Spain" "etiqueta" => "g" "identificador" => "aff0035" ] 7 => array:3 [ "entidad" => "Unidad de Enfermedades Minoritarias, Servicio de Medicina Interna, Hospital Clínico Universitario Lozano Blesa, Zaragoza, Spain" "etiqueta" => "h" "identificador" => "aff0040" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "Corresponding author." ] ] ] ] "titulosAlternativos" => array:1 [ "es" => array:1 [ "titulo" => "Transición desde la asistencia pediátrica a la adulta en pacientes con mucopolisacaridosis" ] ] "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Background</span><p id="par0005" class="elsevierStylePara elsevierViewall">Mucopolysaccharidosis (MPS) are hereditary metabolic diseases caused by defects in a number of intralysosomal enzymes necessary for the processing of certain macromolecules called glycosaminoglycans, which accumulate in various organs and are responsible for multisystemic, chronic and progressive impairment.<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">1,2</span></a> The global incidence rate of MPS is estimated at 1/22,500 live births.<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">3</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Progress in the early diagnosis and treatment of rare hereditary metabolic diseases have increasingly helped more patients reach adulthood. Specialty departments for adults therefore need to adapt to this new situation and address diseases that have traditionally been considered pediatric.<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">4</span></a> This transition process has been defined as the planned step in which adolescents with chronic medical diseases continue to receive the needed services and care when changing from child-focused care to adult-focused care.<a class="elsevierStyleCrossRef" href="#bib0135"><span class="elsevierStyleSup">5</span></a> The transition can be especially complex for children with special healthcare needs. The objective of the transition is to maximize the individual's functioning and potential by providing high-quality healthcare services appropriate for their development that continue uninterrupted as the patient passes from adolescence to adulthood.<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">6</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">There are general recommendations on the transition process both for the general population<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">7,8</span></a> and for youths with special needs,<a class="elsevierStyleCrossRefs" href="#bib0140"><span class="elsevierStyleSup">6,9</span></a> as well as articles on the transition process for patients with chronic diseases such as diabetes,<a class="elsevierStyleCrossRefs" href="#bib0160"><span class="elsevierStyleSup">10,11</span></a> rheumatic disease<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">12</span></a> and congenital metabolic diseases such as phenylketonuria<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">13</span></a> and other metabolic disorders.<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">14</span></a> However, none of the recommendations focus on the transition of patients with MPS. The objective of this consensus study, prepared by a group of pediatricians and internists from reference centers with extensive experience in MPS, is to create a number of recommendations for pediatricians, internists and other health professionals regarding the transition from pediatric to adult care for patients with MPS.</p><p id="par0020" class="elsevierStylePara elsevierViewall">Starting from the scarce literature on the subject and from the workgroup's experience in the transition process, an initial document was developed with the available scientific evidence whose conclusions were agreed upon in 2 meetings held on October 11 and November 30, 2016. In the event of discrepancies in the criteria, the final recommendation was decided by majority. This consensus was endorsed by the Spanish Association for the Study of Inborn Errors of Metabolism and the Spanish Society of Internal Medicine.</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Barriers in the transition process</span><p id="par0025" class="elsevierStylePara elsevierViewall">Generally, the transition from pediatric to adult care involves passing from a more protective and paternal type of care (focused in good measure on the family) to a more independent, patient-focused type of care.</p><p id="par0030" class="elsevierStylePara elsevierViewall">There are barriers that can impede the transition process (<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>), which can arise from the people involved (patients, families, pediatricians and adult-care physicians), and these barriers need to be considered for the transition to be successful.<a class="elsevierStyleCrossRefs" href="#bib0170"><span class="elsevierStyleSup">12,15–17</span></a></p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Transition organization and facilitators</span><p id="par0035" class="elsevierStylePara elsevierViewall">The transition to adulthood is not a specific change that occurs at a precise moment but rather a process that develops over time. Appropriate planning, preparation and implementation of this process is therefore essential.<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">18</span></a></p><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Planning</span><p id="par0040" class="elsevierStylePara elsevierViewall">The transition should take place at 16–18 years of age, although this can vary depending on factors such as the patient's maturity and development, the disease progression and its management and the organization of healthcare services. Nevertheless, a gradual transition needs to be performed, with frequent discussions about the transition plan with the patient and family over the course of a few years. Preparations for this process should start in early adolescence (10–12 years), providing adolescents with information regarding the process so that they can begin to take responsibility for their own care.<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">7,19</span></a> The transition should be performed when the disease is stable, offering the family various alternatives, such as the scheduling of joint, single or multiple visits between the pediatric and adult teams, as well as the creation of a specific transition consultation whose objective is to prepare the adolescent for the transition.<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">20</span></a> If the patient's life expectancy is very short and with the agreement of the family and all involved practitioners, the transition process may be skipped.</p><p id="par0045" class="elsevierStylePara elsevierViewall">To properly plan for the transition of patients with MPS, we should first consider the patient's knowledge (and that of their family) of their disease. We should then consider the autonomy and independence that the patient has developed. The patient and their relatives should be given all information regarding changes in the functioning of the health system for the adult population, the various patient care circuits and the access to hospital resources, which are sometimes very different from those of pediatric care.</p><p id="par0050" class="elsevierStylePara elsevierViewall">The entire process should be programmed and recorded on a calendar, which will ensure correct planning for the times and number of hospital visits. It is advisable to ensure and confirm (by the pediatric and adult teams, the patients themselves and their relatives) the proper execution of the transition plan in terms of the established objectives, which should be periodically reviewed and updated.</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Preparation</span><p id="par0055" class="elsevierStylePara elsevierViewall">Organized transition programs that have pediatric and adult specialists should be made available. The main objective of these programs should be the patient and their environment, given that the management, clinical conditions and complications of the disease differ according to the type of MPS (e.g., bone and connective tissue disorders are predominant in Morquio syndrome, and neurological disorders are predominant in Sanfilippo syndrome) and in each stage of life.<a class="elsevierStyleCrossRefs" href="#bib0210"><span class="elsevierStyleSup">20,21</span></a> The involved specialists include neurologists, trauma surgeons, cardiologists and ophthalmologists. The transition should therefore be conducted in a tertiary reference center for the care of patients with MPS. We need to ensure that the referral of pediatric patients is to a coordinator adult-care physician who has the necessary knowledge and expertise for the subsequent management. We need to involve primary care doctors and nursing staff to avoid gaps in the patient's care.<a class="elsevierStyleCrossRef" href="#bib0220"><span class="elsevierStyleSup">22</span></a></p><p id="par0060" class="elsevierStylePara elsevierViewall">Once the transition process has started and the patient and their relatives are familiar with their adult-care physician, a joint visit is recommended so that the pediatrician can introduce the other professionals who will form part of the multidisciplinary team. This increases the patient's and family's confidence in and adherence to the process.</p><p id="par0065" class="elsevierStylePara elsevierViewall">Throughout the transition, “residual” visits to the pediatrician should be facilitated to report the transition to the pediatrician. Upon completing this process, the objective is to have the patient attend consultations by themselves, ensuring a gradual introduction to the adult healthcare system.</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Implementation</span><p id="par0070" class="elsevierStylePara elsevierViewall">The implementation of the transition process from childhood to adulthood in patients with MPS involves a number of steps that are described below.</p><p id="par0075" class="elsevierStylePara elsevierViewall">The physician coordinator should be in charge of managing the calendar of visits. The presence of practitioners from other specialties might be necessary. The role of the visit manager (either administrative or nursing staff) is extremely important. The computerization of the medical history and processes in the hospital facilitates the management of visits. The first visits can be conducted either in the pediatrics area or the adult area; however, it might be more advisable to conduct the visit in the pediatrics area to maintain familiarity with the environment.</p><p id="par0080" class="elsevierStylePara elsevierViewall">The specific drug treatments for MPS are currently dispensed only in hospitals and should be administered intravenously and weekly and therefore significantly affect the patient's quality of life. For this reason, healthcare alternatives need to be explored so that patients can receive treatment in closer healthcare centers or at home. The patient also needs to be provided education on their medication (indications, mechanisms of action, adverse effects, etc.). Due to the characteristics of patients with MPS, particularly those with MPS types <span class="elsevierStyleSmallCaps">IV</span>, <span class="elsevierStyleSmallCaps">VI</span> and <span class="elsevierStyleSmallCaps">VII</span>, certain diagnostic and therapeutic procedures might still require the use of pediatric material and can even be performed in the pediatric area (e.g., spirometry, ultrasonography with pediatric-sized probes, tracheotomy cannula and orthopedic material).</p><p id="par0085" class="elsevierStylePara elsevierViewall">The reference centers have the responsibility of planning the strategy and supervising the transition process and disease progression. Good coordination between the area hospital and primary care team is important, especially for patients who live far from the reference center, because some processes can be addressed in their area. Home support is essential for patients with high physical dependence.</p><p id="par0090" class="elsevierStylePara elsevierViewall">To communicate the necessary clinical information, a discharge report should be created in the pediatrics area with the most relevant information concerning the patient with MPS. The minimum information this report should include are age, weight, height, type of MPS, pathogenic mutation, surgical history by chronological order, degree of systematic disease involvement, the most relevant complications and the current medication.</p><p id="par0100" class="elsevierStylePara elsevierViewall"><a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a> shows a diagram of the main recommendations to consider for patients with MPS in the transition process from childhood to adulthood.</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia></span></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Conclusions</span><p id="par0105" class="elsevierStylePara elsevierViewall">Improvements in the diagnostic and therapeutic processes in MPS have resulted in an increasing proportion of patients who reach adulthood and who require an appropriate transition from pediatric care. There are potential structural barriers in this process by all agents involved that need to be overcome. The presence of a flexible and systematic transition plan that includes all involved healthcare classes (with a process coordinator from adult medicine) is essential to achieving the fundamental objective: adult-focused patient care, in which autonomy, function and development potential are maximized; in short, ensuring that the patient receives appropriate healthcare for their development.</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Conflict of interests</span><p id="par0110" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interest.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:11 [ 0 => array:3 [ "identificador" => "xres964024" "titulo" => "Abstract" "secciones" => array:1 [ 0 => array:1 [ "identificador" => "abst0005" ] ] ] 1 => array:2 [ "identificador" => "xpalclavsec934092" "titulo" => "Keywords" ] 2 => array:3 [ "identificador" => "xres964023" "titulo" => "Resumen" "secciones" => array:1 [ 0 => array:1 [ "identificador" => "abst0010" ] ] ] 3 => array:2 [ "identificador" => "xpalclavsec934091" "titulo" => "Palabras clave" ] 4 => array:2 [ "identificador" => "sec0005" "titulo" => "Background" ] 5 => array:2 [ "identificador" => "sec0010" "titulo" => "Barriers in the transition process" ] 6 => array:3 [ "identificador" => "sec0015" "titulo" => "Transition organization and facilitators" "secciones" => array:3 [ 0 => array:2 [ "identificador" => "sec0020" "titulo" => "Planning" ] 1 => array:2 [ "identificador" => "sec0025" "titulo" => "Preparation" ] 2 => array:2 [ "identificador" => "sec0030" "titulo" => "Implementation" ] ] ] 7 => array:2 [ "identificador" => "sec0035" "titulo" => "Conclusions" ] 8 => array:2 [ "identificador" => "sec0040" "titulo" => "Conflict of interests" ] 9 => array:2 [ "identificador" => "xack326875" "titulo" => "Acknowledgements" ] 10 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "fechaRecibido" => "2017-03-15" "fechaAceptado" => "2017-06-18" "PalabrasClave" => array:2 [ "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Keywords" "identificador" => "xpalclavsec934092" "palabras" => array:6 [ 0 => "Rare diseases" 1 => "Hereditary metabolic diseases" 2 => "Genetic diseases" 3 => "Mucopolysaccharidosis" 4 => "Children with special needs" 5 => "Transition" ] ] ] "es" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Palabras clave" "identificador" => "xpalclavsec934091" "palabras" => array:6 [ 0 => "Enfermedades raras" 1 => "Enfermedades metabólicas hereditarias" 2 => "Enfermedades genéticas" 3 => "Mucopolisacaridosis" 4 => "Niños con necesidades especiales" 5 => "Transición" ] ] ] ] "tieneResumen" => true "resumen" => array:2 [ "en" => array:2 [ "titulo" => "Abstract" "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Mucopolysaccharidosis are multisystem diseases that require large multidisciplinary teams for their care. Specific recommendations are therefore needed for the transition from childhood to adulthood in this patient group. To overcome the barriers that might arise during the transition, the authors consider it essential to implement a flexible plan with a coordinator for the entire process, systematizing the information through a standardized pediatric discharge report and educating the patient and their family about the disease, showing the characteristics of the healthcare system in this new stage. The final objective is that, once the transition to adulthood has been completed, the patient's autonomy and potential development are maximized and that the patient receives appropriate healthcare during this transition.</p></span>" ] "es" => array:2 [ "titulo" => "Resumen" "resumen" => "<span id="abst0010" class="elsevierStyleSection elsevierViewall"><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Las mucopolisacaridosis son enfermedades multisistémicas que requieren para su atención equipos multidisciplinares amplios. Por ello se hacen necesarias recomendaciones específicas para la transición de la edad pediátrica a la adulta en este grupo de pacientes. Para la superación de las barreras que pudieran surgir durante la transición, los autores consideran esencial realizar un plan flexible con un coordinador de todo el proceso, sistematizar la información a través de un informe de alta pediátrico estandarizado, formar al paciente y su familia sobre la enfermedad y mostrar las características del sistema sanitario en esta nueva etapa. El objetivo final es que al concluir la transición a la edad adulta se haya maximizado la autonomía y el potencial de desarrollo del paciente y este reciba una atención sanitaria adecuada durante dicho periodo de transición.</p></span>" ] ] "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Couce ML, del Toro M, García-Jiménez MC, Gutierrez-Solana L, Hermida-Ameijeiras Á, López-Rodríguez M, et al. Transición desde la asistencia pediátrica a la adulta en pacientes con mucopolisacaridosis. Rev Clin Esp. 2018;218:17–21.</p>" ] ] "multimedia" => array:2 [ 0 => 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:1 [ "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=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Patient \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">•→Vital period of immaturity and changes<br>•→Disease severity and associated disability<br>•→Presence of psychopathology<br>•→Poor treatment adherence<br>•→Lack of confidence in the “new caregivers”<br>•→Lack of the support systems that the patient had in pediatrics \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">Family \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">•→Bond with the pediatric team<br>•→Lack of confidence in the adult team<br>•→Perception of greater severity<br>•→Presence of psychopathology<br>•→Overprotective style<br>•→Family destructuring \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">Pediatrics \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">•→Emotional bonds with patients and their family<br>•→Perception that they can care for adults<br>•→Limited specificity in the care at adult centers<br>•→Lack of confidence in the adult care team \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">Medical internist \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">•→Lack of competence and experience<br>•→Lack of coordination<br>•→Healthcare overload \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">Organizational and structural problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">•→Emergency department admission system for adults<br>•→Limited access to reference centers \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab1633338.png" ] ] ] ] "descripcion" => array:1 [ "en" => "<p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">Barriers in the transition process from pediatric to adult care for patients with mucopolysaccharidosis.</p>" ] ] 1 => 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:1 [ "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=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">•→Preparation of the patient and family for the transition process should start in early adolescence and be implemented at 16–18 years of age. \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">•→The transition process should start when the disease is stable, when there are no significant therapeutic changes. \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">•→For patients with very short life expectancies and with the agreement of the family and involved practitioners, not performing the transition may be considered. \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">•→The process should be reflected in a transition protocol that includes a scheduled activities program supervised by the involved practitioners and updated periodically. \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">•→The transition plan should be individualized and flexible, incorporating the opinion of the patients and their relatives. \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">•→A coordinator for the transition process (typically, a medical internist), who has the necessary knowledge and skills to manage these patients, ensures that the necessary care is provided and integrates the various departments involved in this management. \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">•→The planning and supervision of the transition process should be conducted by the reference center. \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">•→The pediatrician is responsible for creating a discharge report, which should include at least the patient's age, weight, height, type of mucopolysaccharidosis, mutations, surgical history, relevant disease complications and current medication. \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">•→The objectives achieved during the transition process should be monitored. \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab1633339.png" ] ] ] ] "descripcion" => array:1 [ "en" => "<p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">Summary of recommendations to consider in the transition process for patients with mucopolysaccharidosis.</p>" ] ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:22 [ 0 => array:3 [ "identificador" => "bib0115" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Overview of the mucopolysaccharidoses" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "J. 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