Title
Care of patients with Huntington's disease in South America: A survey
Other title
[cuidado de pacientes com doença de huntington na américa do sul: Um inquérito]
Date Issued
01 January 2013
Access level
open access
Resource Type
journal article
Author(s)
Horta Maciel R.O.
Costa Cardoso F.E.
Chaná-Cuevas P.
Fernández W.
Rieder C.R.M.
Serrano-Dueñas M.
Weiser R.
Publisher(s)
Associacao Arquivos de Neuro-Psiquiatria
Abstract
Huntington's disease (HD) is a rare neurodegenerative disease with a multitude of symptoms, which requires access to specialized multidisciplinary care for adequate management. The aim of this study was to survey the characteristics of care in various HD centers in South America (SA). Methods: A questionnaire was sent to 24 centers involved in the care for HD patients in SA. Results: Of the total 24 centers, 19 (79.2%) are academic units. The majority of centers (62.5%) are general movement disorders clinics. Multidisciplinary care is available in 19 (79.2%) centers and in 20 (83.3%) care is provided free of charge. Genetic testing and counseling are available in 25 and 66.6% of centers, respectively. The majority of centers (83.3%) have no institutional support for end-stage care. Conclusions: Although HD centers in SA are committed to providing multidisciplinary care, access to genetic counseling and end-stage care are lacking in most centers.
Start page
368
End page
370
Volume
71
Issue
6
Language
English
OCDE Knowledge area
Psiquiatría
Subjects
Scopus EID
2-s2.0-84880393956
PubMed ID
Source
Arquivos de Neuro-Psiquiatria
ISSN of the container
0004282X
Sources of information:
Directorio de Producción Científica
Scopus