Care of patients with Huntington's disease in South America: a survey Cuidado de pacientes com doença de Huntington na América do Sul: um inquérito

• Main Authors: Ricardo Oliveira Horta Maciel, Francisco Eduardo Costa Cardoso, Pedro Chaná-Cuevas, Carlos Cosentino, William Fernández, Carlos R. M. Rieder, Marcos Serrano-Dueñas, Roberto Weiser
• Format: Article
• Language: English
• Published: Academia Brasileira de Neurologia (ABNEURO) 2013-06-01
• Series: Arquivos de Neuro-Psiquiatria
• Subjects: doença de Huntington; assistência integral à saúde; aconselhamento genético; Huntington disease; comprehensive health care; genetic counseling
• Online Access: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2013000600368

<p id="para1">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).</p> <sec> <title>Methods</title> <p id="para2">A questionnaire was sent to 24 centers involved in the care for HD patients in SA.</p> </sec> <sec> <title>Results</title> <p id="para3">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.</p> </sec> <sec> <title>Conclusions</title> <p id="para4">Although HD centers in SA are committed to providing multidisciplinary care, access to genetic counseling and end-stage care are lacking in most centers.</p> </sec><br><p id="para5">A doen&#231;a de Huntington (DH) &#233; uma doen&#231;a neurodegenerativa rara que requer tratamento multidisciplinar especializado para manejo adequado. O objetivo do presente trabalho foi pesquisar as caracter&#237;sticas da assist&#234;ncia &#224; sa&#250;de em centros de DH na Am&#233;rica do Sul (AS).</p> <sec> <title>M&#233;todos</title> <p id="para6">Um question&#225;rio foi enviado para 24 centros envolvidos no cuidado de pacientes com DH na AS.</p> </sec> <sec> <title>Resultados</title> <p id="para7">Dos 24 centros, 19 (79,2%) s&#227;o unidades acad&#234;micas. A maioria (62,5%) s&#227;o cl&#237;nicas de dist&#250;rbios dos movimentos. Cuidado multidisciplinar &#233; dispon&#237;vel em 19 (79,2%) dos centros e em 20 (83,3%), o tratamento &#233; gratuito. O teste e o aconselhamento gen&#233;tico est&#227;o dispon&#237;veis em 25 e 66,6% dos centros, respectivamente. N&#227;o h&#225; suporte institucional para cuidado terminal em 83,3% dos centros.</p> </sec> <sec> <title>Conclus&#245;es</title> <p id="para8">Apesar dos centros de DH na AS terem compromisso com o provimento de cuidados multidisciplinares, o acesso a aconselhamento gen&#233;tico e a tratamento na fase terminal s&#227;o falhos na maioria dos centros.</p> </sec>