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none of the recommendations focus on the transition of patients with MPS&#46; The objective of this consensus study&#44; prepared by a group of pediatricians and internists from reference centers with extensive experience in MPS&#44; is to create a number of recommendations for pediatricians&#44; internists and other health professionals regarding the transition from pediatric to adult care for patients with MPS&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">Starting from the scarce literature on the subject and from the workgroup&#39;s experience in the transition process&#44; 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&#44; 2016&#46; In the event of discrepancies in the criteria&#44; the final recommendation was decided by majority&#46; This consensus was endorsed by the Spanish Association for the Study of Inborn Errors of Metabolism and the Spanish Society of Internal Medicine&#46;</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&#44; the transition from pediatric to adult care involves passing from a more protective and paternal type of care &#40;focused in good measure on the family&#41; to a more independent&#44; patient-focused type of care&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">There are barriers that can impede the transition process &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#44; which can arise from the people involved &#40;patients&#44; families&#44; pediatricians and adult-care physicians&#41;&#44; and these barriers need to be considered for the transition to be successful&#46;<a class="elsevierStyleCrossRefs" href="#bib0170"><span class="elsevierStyleSup">12&#44;15&#8211;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&#46; Appropriate planning&#44; preparation and implementation of this process is therefore essential&#46;<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&#8211;18 years of age&#44; although this can vary depending on factors such as the patient&#39;s maturity and development&#44; the disease progression and its management and the organization of healthcare services&#46; Nevertheless&#44; a gradual transition needs to be performed&#44; with frequent discussions about the transition plan with the patient and family over the course of a few years&#46; Preparations for this process should start in early adolescence &#40;10&#8211;12 years&#41;&#44; providing adolescents with information regarding the process so that they can begin to take responsibility for their own care&#46;<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">7&#44;19</span></a> The transition should be performed when the disease is stable&#44; offering the family various alternatives&#44; such as the scheduling of joint&#44; single or multiple visits between the pediatric and adult teams&#44; as well as the creation of a specific transition consultation whose objective is to prepare the adolescent for the transition&#46;<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">20</span></a> If the patient&#39;s life expectancy is very short and with the agreement of the family and all involved practitioners&#44; the transition process may be skipped&#46;</p><p id="par0045" class="elsevierStylePara elsevierViewall">To properly plan for the transition of patients with MPS&#44; we should first consider the patient&#39;s knowledge &#40;and that of their family&#41; of their disease&#46; We should then consider the autonomy and independence that the patient has developed&#46; The patient and their relatives should be given all information regarding changes in the functioning of the health system for the adult population&#44; the various patient care circuits and the access to hospital resources&#44; which are sometimes very different from those of pediatric care&#46;</p><p id="par0050" class="elsevierStylePara elsevierViewall">The entire process should be programmed and recorded on a calendar&#44; which will ensure correct planning for the times and number of hospital visits&#46; It is advisable to ensure and confirm &#40;by the pediatric and adult teams&#44; the patients themselves and their relatives&#41; the proper execution of the transition plan in terms of the established objectives&#44; which should be periodically reviewed and updated&#46;</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&#46; The main objective of these programs should be the patient and their environment&#44; given that the management&#44; clinical conditions and complications of the disease differ according to the type of MPS &#40;e&#46;g&#46;&#44; bone and connective tissue disorders are predominant in Morquio syndrome&#44; and neurological disorders are predominant in Sanfilippo syndrome&#41; and in each stage of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0210"><span class="elsevierStyleSup">20&#44;21</span></a> The involved specialists include neurologists&#44; trauma surgeons&#44; cardiologists and ophthalmologists&#46; The transition should therefore be conducted in a tertiary reference center for the care of patients with MPS&#46; 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&#46; We need to involve primary care doctors and nursing staff to avoid gaps in the patient&#39;s care&#46;<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&#44; a joint visit is recommended so that the pediatrician can introduce the other professionals who will form part of the multidisciplinary team&#46; This increases the patient&#39;s and family&#39;s confidence in and adherence to the process&#46;</p><p id="par0065" class="elsevierStylePara elsevierViewall">Throughout the transition&#44; &#8220;residual&#8221; visits to the pediatrician should be facilitated to report the transition to the pediatrician&#46; Upon completing this process&#44; the objective is to have the patient attend consultations by themselves&#44; ensuring a gradual introduction to the adult healthcare system&#46;</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&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">The physician coordinator should be in charge of managing the calendar of visits&#46; The presence of practitioners from other specialties might be necessary&#46; The role of the visit manager &#40;either administrative or nursing staff&#41; is extremely important&#46; The computerization of the medical history and processes in the hospital facilitates the management of visits&#46; The first visits can be conducted either in the pediatrics area or the adult area&#59; however&#44; it might be more advisable to conduct the visit in the pediatrics area to maintain familiarity with the environment&#46;</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&#39;s quality of life&#46; For this reason&#44; healthcare alternatives need to be explored so that patients can receive treatment in closer healthcare centers or at home&#46; The patient also needs to be provided education on their medication &#40;indications&#44; mechanisms of action&#44; adverse effects&#44; etc&#46;&#41;&#46; Due to the characteristics of patients with MPS&#44; particularly those with MPS types <span class="elsevierStyleSmallCaps">IV</span>&#44; <span class="elsevierStyleSmallCaps">VI</span> and <span class="elsevierStyleSmallCaps">VII</span>&#44; certain diagnostic and therapeutic procedures might still require the use of pediatric material and can even be performed in the pediatric area &#40;e&#46;g&#46;&#44; spirometry&#44; ultrasonography with pediatric-sized probes&#44; tracheotomy cannula and orthopedic material&#41;&#46;</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&#46; Good coordination between the area hospital and primary care team is important&#44; especially for patients who live far from the reference center&#44; because some processes can be addressed in their area&#46; Home support is essential for patients with high physical dependence&#46;</p><p id="par0090" class="elsevierStylePara elsevierViewall">To communicate the necessary clinical information&#44; a discharge report should be created in the pediatrics area with the most relevant information concerning the patient with MPS&#46; The minimum information this report should include are age&#44; weight&#44; height&#44; type of MPS&#44; pathogenic mutation&#44; surgical history by chronological order&#44; degree of systematic disease involvement&#44; the most relevant complications and the current medication&#46;</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&#46;</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&#46; There are potential structural barriers in this process by all agents involved that need to be overcome&#46; The presence of a flexible and systematic transition plan that includes all involved healthcare classes &#40;with a process coordinator from adult medicine&#41; is essential to achieving the fundamental objective&#58; adult-focused patient care&#44; in which autonomy&#44; function and development potential are maximized&#59; in short&#44; ensuring that the patient receives appropriate healthcare for their development&#46;</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&#46;</p></span></span>"
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            0 => "Rare diseases"
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            3 => "Mucopolysaccharidosis"
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        "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&#46; Specific recommendations are therefore needed for the transition from childhood to adulthood in this patient group&#46; To overcome the barriers that might arise during the transition&#44; the authors consider it essential to implement a flexible plan with a coordinator for the entire process&#44; systematizing the information through a standardized pediatric discharge report and educating the patient and their family about the disease&#44; showing the characteristics of the healthcare system in this new stage&#46; The final objective is that&#44; once the transition to adulthood has been completed&#44; the patient&#39;s autonomy and potential development are maximized and that the patient receives appropriate healthcare during this transition&#46;</p></span>"
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        "resumen" => "<span id="abst0010" class="elsevierStyleSection elsevierViewall"><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Las mucopolisacaridosis son enfermedades multisist&#233;micas que requieren para su atenci&#243;n equipos multidisciplinares amplios&#46; Por ello se hacen necesarias recomendaciones espec&#237;ficas para la transici&#243;n de la edad pedi&#225;trica a la adulta en este grupo de pacientes&#46; Para la superaci&#243;n de las barreras que pudieran surgir durante la transici&#243;n&#44; los autores consideran esencial realizar un plan flexible con un coordinador de todo el proceso&#44; sistematizar la informaci&#243;n a trav&#233;s de un informe de alta pedi&#225;trico estandarizado&#44; formar al paciente y su familia sobre la enfermedad y mostrar las caracter&#237;sticas del sistema sanitario en esta nueva etapa&#46; El objetivo final es que al concluir la transici&#243;n a la edad adulta se haya maximizado la autonom&#237;a y el potencial de desarrollo del paciente y este reciba una atenci&#243;n sanitaria adecuada durante dicho periodo de transici&#243;n&#46;</p></span>"
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        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; Couce ML&#44; del Toro M&#44; Garc&#237;a-Jim&#233;nez MC&#44; Gutierrez-Solana L&#44; Hermida-Ameijeiras &#193;&#44; L&#243;pez-Rodr&#237;guez M&#44; et al&#46; Transici&#243;n desde la asistencia pedi&#225;trica a la adulta en pacientes con mucopolisacaridosis&#46; Rev Clin Esp&#46; 2018&#59;218&#58;17&#8211;21&#46;</p>"
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                  \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">&#8226;&#8594;The transition process should start when the disease is stable&#44; when there are no significant therapeutic changes&#46;&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">&#8226;&#8594;For patients with very short life expectancies and with the agreement of the family and involved practitioners&#44; not performing the transition may be considered&#46;&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">&#8226;&#8594;The process should be reflected in a transition protocol that includes a scheduled activities program supervised by the involved practitioners and updated periodically&#46;&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">&#8226;&#8594;The transition plan should be individualized and flexible&#44; incorporating the opinion of the patients and their relatives&#46;&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">&#8226;&#8594;A coordinator for the transition process &#40;typically&#44; a medical internist&#41;&#44; who has the necessary knowledge and skills to manage these patients&#44; ensures that the necessary care is provided and integrates the various departments involved in this management&#46;&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">&#8226;&#8594;The planning and supervision of the transition process should be conducted by the reference center&#46;&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">&#8226;&#8594;The pediatrician is responsible for creating a discharge report&#44; which should include at least the patient&#39;s age&#44; weight&#44; height&#44; type of mucopolysaccharidosis&#44; mutations&#44; surgical history&#44; relevant disease complications and current medication&#46;&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">&#8226;&#8594;The objectives achieved during the transition process should be monitored&#46;&nbsp;\t\t\t\t\t\t\n
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                    0 => array:2 [
                      "titulo" => "Overview of the mucopolysaccharidoses"
                      "autores" => array:1 [
                        0 => array:2 [
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                          "autores" => array:1 [
                            0 => "J&#46; Muenzer"
                          ]
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                      ]
                    ]
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                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "Rheumatology &#40;Oxford&#41;"
                        "fecha" => "2011"
                        "volumen" => "50"
                        "numero" => "Suppl&#46; 5"
                        "paginaInicial" => "v4"
                        "paginaFinal" => "v12"
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                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Mucopolysaccharidoses and other lysosomal storage diseases"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "C&#46; Lampe"
                            1 => "C&#46;M&#46; Bellettato"
                            2 => "N&#46; Karabul"
                            3 => "M&#46; Scarpa"
                          ]
                        ]
                      ]
                    ]
                  ]
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                    0 => array:2 [
                      "doi" => "10.1016/j.rdc.2013.03.004"
                      "Revista" => array:6 [
                        "tituloSerie" => "Rheum Dis Clin North Am"
                        "fecha" => "2013"
                        "volumen" => "39"
                        "paginaInicial" => "431"
                        "paginaFinal" => "455"
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Special article
Transition from pediatric care to adult care for patients with mucopolysaccharidosis
Transición desde la asistencia pediátrica a la adulta en pacientes con mucopolisacaridosis
M.L. Coucea,
Corresponding author
maria.luz.couce.pico@sergas.es

Corresponding author.
, M. del Torob, M.C. García-Jiménezc, L. Gutierrez-Solanad, Á. Hermida-Ameijeirase, M. López-Rodríguezf, J. Pérez-Lópezg, M.Á. Torralbah
a 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
b Servicio de Neurología Pediátrica, Hospital Universitario Vall d’Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain
c Unidad de Metabolopatías, Servicio Pediatría, Hospital Universitario Miguel Servet, Instituto Aragonés de Ciencias de la Salud, Zaragoza, Spain
d Servicio de Neuropediatría, Hospital Niño Jesús, Madrid, Spain
e Unidad de Enfermedades Metabólicas Congénitas, Servicio de Medicina Interna, Hospital Clínico Universitario de Santiago de Compostela, Santiago de Compostela, A Coruña, Spain
f Servicio de Medicina Interna, Hospital Central de la Cruz Roja, Madrid, Spain
g Errores Congénitos del Metabolismo del Adulto, Unidad de Enfermedades Minoritarias, Hospital Universitario Vall d’Hebron, Barcelona, Spain
h Unidad de Enfermedades Minoritarias, Servicio de Medicina Interna, Hospital Clínico Universitario Lozano Blesa, Zaragoza, Spain
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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Background</span><p id="par0005" class="elsevierStylePara elsevierViewall">Mucopolysaccharidosis &#40;MPS&#41; are hereditary metabolic diseases caused by defects in a number of intralysosomal enzymes necessary for the processing of certain macromolecules called glycosaminoglycans&#44; which accumulate in various organs and are responsible for multisystemic&#44; chronic and progressive impairment&#46;<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">1&#44;2</span></a> The global incidence rate of MPS is estimated at 1&#47;22&#44;500 live births&#46;<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&#46; Specialty departments for adults therefore need to adapt to this new situation and address diseases that have traditionally been considered pediatric&#46;<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&#46;<a class="elsevierStyleCrossRef" href="#bib0135"><span class="elsevierStyleSup">5</span></a> The transition can be especially complex for children with special healthcare needs&#46; The objective of the transition is to maximize the individual&#39;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&#46;<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&#44;8</span></a> and for youths with special needs&#44;<a class="elsevierStyleCrossRefs" href="#bib0140"><span class="elsevierStyleSup">6&#44;9</span></a> as well as articles on the transition process for patients with chronic diseases such as diabetes&#44;<a class="elsevierStyleCrossRefs" href="#bib0160"><span class="elsevierStyleSup">10&#44;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&#46;<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">14</span></a> However&#44; none of the recommendations focus on the transition of patients with MPS&#46; The objective of this consensus study&#44; prepared by a group of pediatricians and internists from reference centers with extensive experience in MPS&#44; is to create a number of recommendations for pediatricians&#44; internists and other health professionals regarding the transition from pediatric to adult care for patients with MPS&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">Starting from the scarce literature on the subject and from the workgroup&#39;s experience in the transition process&#44; 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&#44; 2016&#46; In the event of discrepancies in the criteria&#44; the final recommendation was decided by majority&#46; This consensus was endorsed by the Spanish Association for the Study of Inborn Errors of Metabolism and the Spanish Society of Internal Medicine&#46;</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&#44; the transition from pediatric to adult care involves passing from a more protective and paternal type of care &#40;focused in good measure on the family&#41; to a more independent&#44; patient-focused type of care&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">There are barriers that can impede the transition process &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#44; which can arise from the people involved &#40;patients&#44; families&#44; pediatricians and adult-care physicians&#41;&#44; and these barriers need to be considered for the transition to be successful&#46;<a class="elsevierStyleCrossRefs" href="#bib0170"><span class="elsevierStyleSup">12&#44;15&#8211;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&#46; Appropriate planning&#44; preparation and implementation of this process is therefore essential&#46;<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&#8211;18 years of age&#44; although this can vary depending on factors such as the patient&#39;s maturity and development&#44; the disease progression and its management and the organization of healthcare services&#46; Nevertheless&#44; a gradual transition needs to be performed&#44; with frequent discussions about the transition plan with the patient and family over the course of a few years&#46; Preparations for this process should start in early adolescence &#40;10&#8211;12 years&#41;&#44; providing adolescents with information regarding the process so that they can begin to take responsibility for their own care&#46;<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">7&#44;19</span></a> The transition should be performed when the disease is stable&#44; offering the family various alternatives&#44; such as the scheduling of joint&#44; single or multiple visits between the pediatric and adult teams&#44; as well as the creation of a specific transition consultation whose objective is to prepare the adolescent for the transition&#46;<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">20</span></a> If the patient&#39;s life expectancy is very short and with the agreement of the family and all involved practitioners&#44; the transition process may be skipped&#46;</p><p id="par0045" class="elsevierStylePara elsevierViewall">To properly plan for the transition of patients with MPS&#44; we should first consider the patient&#39;s knowledge &#40;and that of their family&#41; of their disease&#46; We should then consider the autonomy and independence that the patient has developed&#46; The patient and their relatives should be given all information regarding changes in the functioning of the health system for the adult population&#44; the various patient care circuits and the access to hospital resources&#44; which are sometimes very different from those of pediatric care&#46;</p><p id="par0050" class="elsevierStylePara elsevierViewall">The entire process should be programmed and recorded on a calendar&#44; which will ensure correct planning for the times and number of hospital visits&#46; It is advisable to ensure and confirm &#40;by the pediatric and adult teams&#44; the patients themselves and their relatives&#41; the proper execution of the transition plan in terms of the established objectives&#44; which should be periodically reviewed and updated&#46;</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&#46; The main objective of these programs should be the patient and their environment&#44; given that the management&#44; clinical conditions and complications of the disease differ according to the type of MPS &#40;e&#46;g&#46;&#44; bone and connective tissue disorders are predominant in Morquio syndrome&#44; and neurological disorders are predominant in Sanfilippo syndrome&#41; and in each stage of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0210"><span class="elsevierStyleSup">20&#44;21</span></a> The involved specialists include neurologists&#44; trauma surgeons&#44; cardiologists and ophthalmologists&#46; The transition should therefore be conducted in a tertiary reference center for the care of patients with MPS&#46; 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&#46; We need to involve primary care doctors and nursing staff to avoid gaps in the patient&#39;s care&#46;<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&#44; a joint visit is recommended so that the pediatrician can introduce the other professionals who will form part of the multidisciplinary team&#46; This increases the patient&#39;s and family&#39;s confidence in and adherence to the process&#46;</p><p id="par0065" class="elsevierStylePara elsevierViewall">Throughout the transition&#44; &#8220;residual&#8221; visits to the pediatrician should be facilitated to report the transition to the pediatrician&#46; Upon completing this process&#44; the objective is to have the patient attend consultations by themselves&#44; ensuring a gradual introduction to the adult healthcare system&#46;</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&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">The physician coordinator should be in charge of managing the calendar of visits&#46; The presence of practitioners from other specialties might be necessary&#46; The role of the visit manager &#40;either administrative or nursing staff&#41; is extremely important&#46; The computerization of the medical history and processes in the hospital facilitates the management of visits&#46; The first visits can be conducted either in the pediatrics area or the adult area&#59; however&#44; it might be more advisable to conduct the visit in the pediatrics area to maintain familiarity with the environment&#46;</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&#39;s quality of life&#46; For this reason&#44; healthcare alternatives need to be explored so that patients can receive treatment in closer healthcare centers or at home&#46; The patient also needs to be provided education on their medication &#40;indications&#44; mechanisms of action&#44; adverse effects&#44; etc&#46;&#41;&#46; Due to the characteristics of patients with MPS&#44; particularly those with MPS types <span class="elsevierStyleSmallCaps">IV</span>&#44; <span class="elsevierStyleSmallCaps">VI</span> and <span class="elsevierStyleSmallCaps">VII</span>&#44; certain diagnostic and therapeutic procedures might still require the use of pediatric material and can even be performed in the pediatric area &#40;e&#46;g&#46;&#44; spirometry&#44; ultrasonography with pediatric-sized probes&#44; tracheotomy cannula and orthopedic material&#41;&#46;</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&#46; Good coordination between the area hospital and primary care team is important&#44; especially for patients who live far from the reference center&#44; because some processes can be addressed in their area&#46; Home support is essential for patients with high physical dependence&#46;</p><p id="par0090" class="elsevierStylePara elsevierViewall">To communicate the necessary clinical information&#44; a discharge report should be created in the pediatrics area with the most relevant information concerning the patient with MPS&#46; The minimum information this report should include are age&#44; weight&#44; height&#44; type of MPS&#44; pathogenic mutation&#44; surgical history by chronological order&#44; degree of systematic disease involvement&#44; the most relevant complications and the current medication&#46;</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&#46;</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&#46; There are potential structural barriers in this process by all agents involved that need to be overcome&#46; The presence of a flexible and systematic transition plan that includes all involved healthcare classes &#40;with a process coordinator from adult medicine&#41; is essential to achieving the fundamental objective&#58; adult-focused patient care&#44; in which autonomy&#44; function and development potential are maximized&#59; in short&#44; ensuring that the patient receives appropriate healthcare for their development&#46;</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&#46;</p></span></span>"
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        "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&#46; Specific recommendations are therefore needed for the transition from childhood to adulthood in this patient group&#46; To overcome the barriers that might arise during the transition&#44; the authors consider it essential to implement a flexible plan with a coordinator for the entire process&#44; systematizing the information through a standardized pediatric discharge report and educating the patient and their family about the disease&#44; showing the characteristics of the healthcare system in this new stage&#46; The final objective is that&#44; once the transition to adulthood has been completed&#44; the patient&#39;s autonomy and potential development are maximized and that the patient receives appropriate healthcare during this transition&#46;</p></span>"
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        "resumen" => "<span id="abst0010" class="elsevierStyleSection elsevierViewall"><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Las mucopolisacaridosis son enfermedades multisist&#233;micas que requieren para su atenci&#243;n equipos multidisciplinares amplios&#46; Por ello se hacen necesarias recomendaciones espec&#237;ficas para la transici&#243;n de la edad pedi&#225;trica a la adulta en este grupo de pacientes&#46; Para la superaci&#243;n de las barreras que pudieran surgir durante la transici&#243;n&#44; los autores consideran esencial realizar un plan flexible con un coordinador de todo el proceso&#44; sistematizar la informaci&#243;n a trav&#233;s de un informe de alta pedi&#225;trico estandarizado&#44; formar al paciente y su familia sobre la enfermedad y mostrar las caracter&#237;sticas del sistema sanitario en esta nueva etapa&#46; El objetivo final es que al concluir la transici&#243;n a la edad adulta se haya maximizado la autonom&#237;a y el potencial de desarrollo del paciente y este reciba una atenci&#243;n sanitaria adecuada durante dicho periodo de transici&#243;n&#46;</p></span>"
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        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; Couce ML&#44; del Toro M&#44; Garc&#237;a-Jim&#233;nez MC&#44; Gutierrez-Solana L&#44; Hermida-Ameijeiras &#193;&#44; L&#243;pez-Rodr&#237;guez M&#44; et al&#46; Transici&#243;n desde la asistencia pedi&#225;trica a la adulta en pacientes con mucopolisacaridosis&#46; Rev Clin Esp&#46; 2018&#59;218&#58;17&#8211;21&#46;</p>"
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                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">&#8226;&#8594;Vital period of immaturity and changes<br>&#8226;&#8594;Disease severity and associated disability<br>&#8226;&#8594;Presence of psychopathology<br>&#8226;&#8594;Poor treatment adherence<br>&#8226;&#8594;Lack of confidence in the &#8220;new caregivers&#8221;<br>&#8226;&#8594;Lack of the support systems that the patient had in pediatrics&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">&#8226;&#8594;Lack of competence and experience<br>&#8226;&#8594;Lack of coordination<br>&#8226;&#8594;Healthcare overload&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">Organizational and structural problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">&#8226;&#8594;Emergency department admission system for adults<br>&#8226;&#8594;Limited access to reference centers&nbsp;\t\t\t\t\t\t\n
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                  \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">&#8226;&#8594;Preparation of the patient and family for the transition process should start in early adolescence and be implemented at 16&#8211;18 years of age&#46;&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">&#8226;&#8594;The transition process should start when the disease is stable&#44; when there are no significant therapeutic changes&#46;&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">&#8226;&#8594;For patients with very short life expectancies and with the agreement of the family and involved practitioners&#44; not performing the transition may be considered&#46;&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">&#8226;&#8594;The process should be reflected in a transition protocol that includes a scheduled activities program supervised by the involved practitioners and updated periodically&#46;&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">&#8226;&#8594;The transition plan should be individualized and flexible&#44; incorporating the opinion of the patients and their relatives&#46;&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">&#8226;&#8594;A coordinator for the transition process &#40;typically&#44; a medical internist&#41;&#44; who has the necessary knowledge and skills to manage these patients&#44; ensures that the necessary care is provided and integrates the various departments involved in this management&#46;&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">&#8226;&#8594;The planning and supervision of the transition process should be conducted by the reference center&#46;&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">&#8226;&#8594;The pediatrician is responsible for creating a discharge report&#44; which should include at least the patient&#39;s age&#44; weight&#44; height&#44; type of mucopolysaccharidosis&#44; mutations&#44; surgical history&#44; relevant disease complications and current medication&#46;&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">&#8226;&#8594;The objectives achieved during the transition process should be monitored&#46;&nbsp;\t\t\t\t\t\t\n
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        "texto" => "<p id="par0115" class="elsevierStylePara elsevierViewall">The authors would like to thank the following individuals for their critical review and helpful comments&#58; Dr&#46; Juan Ignacio P&#233;rez Calvo &#40;Department of Internal Medicine&#44; University Hospital Clinic Lozano Blesa&#44; Zaragoza&#41; and Dr&#46; Jaime Dalmau Serra &#40;Nutrition and Metabolic Diseases Unit&#44; Children&#39;s Hospital La Fe&#44; Valencia&#41;&#46;</p>"
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Article information
ISSN: 22548874
Original language: English
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