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Authordc.contributor.authorFaúndes Gómez, Víctor 
Authordc.contributor.authorSalas, Isabel 
Authordc.contributor.authorCorrea Burrows, Paulina 
Authordc.contributor.authorSoto Reyes, Paula 
Authordc.contributor.authorPeña, María Ignacia 
Authordc.contributor.authorPugin, Angela 
Authordc.contributor.authorBravo, Paulina 
Authordc.contributor.authorSanta María Vásquez, Lorena 
Authordc.contributor.authorMorales, Paulina 
Authordc.contributor.authorCurotto, Bianca 
Authordc.contributor.authorAliaga, Solange 
Authordc.contributor.authorAlliende, María Angélica 
Admission datedc.date.accessioned2018-07-19T22:54:08Z
Available datedc.date.available2018-07-19T22:54:08Z
Publication datedc.date.issued2018
Cita de ítemdc.identifier.citationJournal of Policy and Practice in Intellectual Disabilities, Volume 15 Number 1 pp 63–69 March 2018es_ES
Identifierdc.identifier.other10.1111/jppi.12229
Identifierdc.identifier.urihttp://repositorio.uchile.cl/handle/2250/150055
Abstractdc.description.abstractThe study aim was to evaluate the administration and achievements of a Fragile X syndrome (FXS) centre in Chile. Families with children with FXS who sought care at our centre (CDTSXF) answered a survey to evaluate parent satisfaction. We analyzed adherence to management and the costs of CDTSXF operation. The percentage of parents satisfied with CDTSXF management ranged from 38% for speech development, to 100% for general management. The financial costs covered 70% of economic costs of centre operation. Patient adherence was associated with the age at admission to CDTSXF. Low satisfaction with language development could be attributed to low treatment adherence. The CDTSXF should study different mechanisms of financing its operation, estimate the cost of FXS for families, and improve treatment adherence among older patients.es_ES
Lenguagedc.language.isoenes_ES
Publisherdc.publisherWileyes_ES
Type of licensedc.rightsAttribution-NonCommercial-NoDerivs 3.0 Chile*
Link to Licensedc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/3.0/cl/*
Sourcedc.sourceJournal of Policy and Practice in Intellectual Disabilitieses_ES
Keywordsdc.subjectCostses_ES
Keywordsdc.subjectFragile X syndromees_ES
Keywordsdc.subjectPractice implicationses_ES
Keywordsdc.subjectSatisfactiones_ES
Keywordsdc.subjectTreatment Adherencees_ES
Títulodc.titlePatients with fragile X syndrome attending a specialized centre in Chile: parent satisfaction, costs and adherencees_ES
Document typedc.typeArtículo de revistaes_ES
Catalogueruchile.catalogadortjnes_ES
Indexationuchile.indexArtículo de publicación ISIes_ES


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Attribution-NonCommercial-NoDerivs 3.0 Chile
Except where otherwise noted, this item's license is described as Attribution-NonCommercial-NoDerivs 3.0 Chile