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New NINDS Spanish Language Web Site Debuts

Stump, Elizabeth

doi: 10.1097/01.10149.0000309779.70640.0c
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ARTICLE IN BRIEF

  • ✓ In response to an ever-expanding Hispanic population in the U.S., the NINDS has launched a Web site to offer information about neurological disorders in Spanish.

A new Spanish language Web site providing free, comprehensive information on neurological disorders was launched by the NINDS in December. The site is an excellent resource for patients and families, experts said, particularly in regions where a majority of patients speak Spanish as their primary language and are not adept in English.

The site — espanol.ninds.nih.gov — features educational publications on Parkinson disease, stroke, autism, dementia, and epilepsy, among other neurological disorders. The documents can be downloaded or ordered for free. The Web site also includes information on clinical studies, nonprofit organizations for neurological disorders, and a form for submitting health and biomedical research questions.

Mitchell S. V. Elkind, MD, associate professor of neurology at the Columbia University Medical Center in New York City, praised the site for its breadth and easy-to-access format. Approximately 50 percent of the patients at Columbia are Hispanic, and Spanish is typically their only language, he said. Many of the faculty and staff speak Spanish as does Dr. Elkind, but he often uses a translator for more complicated patient history-taking and discussions.

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A Growing Hispanic Population

The establishment of the Spanish language NINDS site comes at a good time, experts said, because the nation's Hispanic population is at an all-time high of more than 44 million, constituting 15 percent of the total U.S. population, according to the 2006 U.S. Census — and the number is growing. The census predicts that by 2050, 102.6 million Hispanics will make up 24 percent of the U.S. population.

Whether or not Spanish-speaking patients will take advantage of the new online tool, however, is another question. Computer literacy among some Hispanic patients at Columbia is low, Dr. Elkind observed, although young people may get more out of the Internet than older patients, he said.

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Other Barriers to Care

Some of the barriers may be generational and not cultural, agreed Barry Baumel, MD, a clinical research neurologist in Miami, FL. As long as the NINDS site is high on the search results list and easy to navigate and understand, the site will be useful, he said.

Dr. Elkind pointed out additional cultural factors, besides language, that serve as barriers to care, including poverty; access to physicians, medication, and education; and trust in doctors and fear of hospitals.

“Reading about the benefits of exercise and healthy lifestyles on a Web site probably will not translate into easy availability of healthy foods in the local store. Broader community-wide and nation-wide efforts will be needed to change the culture,” he said. “But education and availability of information is a good place to start,” he noted, emphasizing the importance of measuring the effects and benefits of the resource in order to better maximize patients' use of it.

Educational outreach also should be expanded to address the understanding and interpretation of clinical research and randomized trials. “People want better care — but they have little understanding of how we determine what that is,” Dr. Elkind said, adding that he'd like to see this topic on the NINDS site.

Christine Hunter, RN, the research manager at the Parkinson's Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, TX, said that the site is a great initial step towards furthering education and awareness. Hunter said she has requested to have the clinic's Web site link to the NINDS site, to broaden their community outreach.

An educated and informed populace will have better health outcomes, concluded Dr. Baumel. He suggested that the NINDS site and similar health-related sites be publicized by health care providers, public agencies, and the pharmaceutical industry.

©2008 American Academy of Neurology