Spinal cord issues in adult patients with MPS: transition of care survey

12 páginas

Autores:: Ghotme Ghotme, Kemel Ahmed
Alvarado Gómez, Fernando
Lampe, Christina
White, Klane K.
Solano Villareal, Martha
Giugliani, Roberto
Harmatz, Paul R.

Tipo de recurso:

Fecha de publicación:: 2018

Institución:: Universidad de la Sabana

Repositorio:: Repositorio Universidad de la Sabana

Idioma:: eng

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spelling	Ghotme Ghotme, Kemel AhmedAlvarado Gómez, FernandoLampe, ChristinaWhite, Klane K.Solano Villareal, MarthaGiugliani, RobertoHarmatz, Paul R.7/12/2019 10:192019-07-12T15:19:19Z2018-05-270256-7040https://link.springer.com/article/10.1007/s00381-018-3834-6https://link.springer.com/content/pdf/10.1007%2Fs00381-018-3834-6.pdfhttp://hdl.handle.net/10818/3610410.1007/s00381-018-3834-612 páginasPurpose This study aims to raise awareness of the need for research and appropriate guidelines for managing spinal cord issues in adult patients with mucopolysaccharidosis (MPS) and transition of these patients from pediatric to adult care. Methods Pediatric/adult neurosurgeons, orthopedic spine surgeons, and treating physicians with expertise in metabolic disorders and spinal cord issues were invited to complete a survey to assess their experience with spinal cord problems in MPS and their opinion on transitioning routes from pediatric to adult care. Results Twenty specialists completed the survey; 16 had treated spinal cord issues in patients with MPS. Foramen magnum and cervical stenosis (87%), atlanto-axial instability (67%), and lumbar spine instability (33%) were the main spinal cord issues encountered; 28% had treated adult patients for one or more spinal cord issues. In 40% of cases, this concerned an intervention or procedures performed during childhood. The main specialist responsible for the care of adult patients with MPS differed considerably between institutions and included both pediatric and adult specialists (30% pediatric neurosurgeons, 10% pediatric spine orthopedic surgeons, 30% adult spine neurosurgeons, 20% general adult surgeons). The preferred option (> 50%) for the transition of care was an interdisciplinary team of pediatric and adult specialists.application/pdfengChild's Nervous SystemChild's Nervous System (2018) 34:1759–1765Attribution-NonCommercial-NoDerivatives 4.0 Internationalhttp://creativecommons.org/licenses/by-nc-nd/4.0/http://purl.org/coar/access_right/c_abf2Universidad de La SabanaIntellectum Repositorio Universidad de La SabanaMucopolysaccharidosesSpinal cordTransition to adult careSurveySpinal cord issues in adult patients with MPS: transition of care surveyarticlepublishedVersionhttp://purl.org/coar/version/c_970fb48d4fbd8a85http://purl.org/coar/resource_type/c_6501CC-LICENSElicense_rdflicense_rdfapplication/rdf+xml; charset=utf-8805https://intellectum.unisabana.edu.co/bitstream/10818/36104/2/license_rdf4460e5956bc1d1639be9ae6146a50347MD52LICENSElicense.txtlicense.txttext/plain; charset=utf-8498https://intellectum.unisabana.edu.co/bitstream/10818/36104/3/license.txtf52a2cfd4df262e08e9b300d62c85cabMD5310818/36104oai:intellectum.unisabana.edu.co:10818/361042022-05-10 05:18:12.833Intellectum Universidad de la Sabanacontactointellectum@unisabana.edu.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
dc.title.es_CO.fl_str_mv	Spinal cord issues in adult patients with MPS: transition of care survey
title	Spinal cord issues in adult patients with MPS: transition of care survey
spellingShingle	Spinal cord issues in adult patients with MPS: transition of care survey Mucopolysaccharidoses Spinal cord Transition to adult care Survey
title_short	Spinal cord issues in adult patients with MPS: transition of care survey
title_full	Spinal cord issues in adult patients with MPS: transition of care survey
title_fullStr	Spinal cord issues in adult patients with MPS: transition of care survey
title_full_unstemmed	Spinal cord issues in adult patients with MPS: transition of care survey
title_sort	Spinal cord issues in adult patients with MPS: transition of care survey
dc.creator.fl_str_mv	Ghotme Ghotme, Kemel Ahmed Alvarado Gómez, Fernando Lampe, Christina White, Klane K. Solano Villareal, Martha Giugliani, Roberto Harmatz, Paul R.
dc.contributor.author.none.fl_str_mv	Ghotme Ghotme, Kemel Ahmed Alvarado Gómez, Fernando Lampe, Christina White, Klane K. Solano Villareal, Martha Giugliani, Roberto Harmatz, Paul R.
dc.subject.es_CO.fl_str_mv	Mucopolysaccharidoses Spinal cord Transition to adult care Survey
topic	Mucopolysaccharidoses Spinal cord Transition to adult care Survey
description	12 páginas
publishDate	2018
dc.date.issued.none.fl_str_mv	2018-05-27
dc.date.available.none.fl_str_mv	2019-07-12T15:19:19Z
dc.date.accessioned.none.fl_str_mv	7/12/2019 10:19
dc.type.en.fl_str_mv	article
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dc.identifier.issn.none.fl_str_mv	0256-7040
dc.identifier.other.none.fl_str_mv	https://link.springer.com/article/10.1007/s00381-018-3834-6 https://link.springer.com/content/pdf/10.1007%2Fs00381-018-3834-6.pdf
dc.identifier.uri.none.fl_str_mv	http://hdl.handle.net/10818/36104
dc.identifier.doi.none.fl_str_mv	10.1007/s00381-018-3834-6
identifier_str_mv	0256-7040 10.1007/s00381-018-3834-6
url	https://link.springer.com/article/10.1007/s00381-018-3834-6 https://link.springer.com/content/pdf/10.1007%2Fs00381-018-3834-6.pdf http://hdl.handle.net/10818/36104
dc.language.iso.es_CO.fl_str_mv	eng
language	eng
dc.relation.ispartofseries.none.fl_str_mv	Child's Nervous System (2018) 34:1759–1765
dc.rights.*.fl_str_mv	Attribution-NonCommercial-NoDerivatives 4.0 International
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rights_invalid_str_mv	Attribution-NonCommercial-NoDerivatives 4.0 International http://creativecommons.org/licenses/by-nc-nd/4.0/ http://purl.org/coar/access_right/c_abf2
dc.format.es_CO.fl_str_mv	application/pdf
dc.publisher.es_CO.fl_str_mv	Child's Nervous System
dc.source.es_CO.fl_str_mv	Universidad de La Sabana Intellectum Repositorio Universidad de La Sabana
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Spinal cord issues in adult patients with MPS: transition of care survey

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