Care of patients with Huntington's disease in South America: a survey

Arquivos de Neuro-Psiquiatria

Ricardo Oliveira Horta Maciel¹  Francisco Eduardo Costa Cardoso¹  Pedro Chana-cuevas¹  Carlos Cosentino¹  William Fernandez¹  Carlos R. M. Rieder¹  Marcos Serrano-duenas¹  Roberto Weiser¹ 

关键词: Huntington disease;    comprehensive health care;    genetic counseling;    doenca de Huntington;    assistencia integral a saude;    aconselhamento genetico;   

DOI  :  10.1590/0004-282X20130040

来源: SciELO

【 摘 要 】

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.

【 授权许可】

CC BY   
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