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May 1, 1999

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Chronically Ill Teens Turn To Internet For Peer Support, Researchers Report

A team of medical informatics and child life specialists at the Johns Hopkins Children's Center has met the challenge of providing peer support to seriously ill teenagers with an Internet service, Hopkins Teen Central. Hopkins Teen Central's creators say the service shows potential for wide use in hospitals nationwide.

Reporting on the project today at the 1999 Pediatric Academic Societies meeting in San Francisco, one of the Children's Center team said teenagers with such chronic diseases as cystic fibrosis (CF) become socially isolated because of their symptoms or treatments, making it difficult to arrange traditional, in-person support groups to address emotional and social needs.

According to Kevin Johnson, M.D., assistant professor of pediatrics at the Children's Center, Hopkins Teen Central is a virtual support group. The password-protected Web site links adolescent CF patients with one another and Children's Center clinical staff. The site consists of personalized patient profiles, question-and-answer pages, private pages, a group message board and reference information. Children's Center CF patients access the site through their personal computers or through WebTV devices provided by the hospital.

Hopkins Teen Central was developed by Russ Ravert, a child life specialist who focuses on enhancing the emotional and social well-being of Children's Center patients; social worker Andrea Everton; computer programmer George Ciervo; and Johnson, a medical informatics specialist.

The service was launched in September 1997 with 17 Children's Center CF patients. A one-year evaluation showed that each participant used the site an average of six times per month, and 24 percent logged in more than 12 times per month. Although users showed no increased knowledge of CF, or altered perceptions of their care, interactive events, such as scavenger hunts and hospital bingo, increased use of the site, and e-mail was used universally.

More than half of all interactions occurred at the message board, where teens conversed with one another about living with CF and other, more common teen issues. Researchers found a significant increase in the perceptions of the group when asked if they had friends with CF they could relate to, leading them to conclude that an Internet-based program can increase important peer support for children with chronic diseases. The site also helped the teenagers bond with one another in a close support network that will grow increasingly more important as they get sicker, researchers said.

"Many of these teens may have never met another kid with cystic fibrosis," said Ravert, who manages the Web site and monitors messages. "On Hopkins Teen Central, they talk to one another about their common problems as CF patients but also about everyday teen issues."

The teens currently signed on to Hopkins Teen Central are patients at Johns Hopkins Children's Center and live in Maryland, Pennsylvania and Delaware. The Baltimore-based Grant-A-Wish Foundation recently launched the Dreamsurfer Network, bringing the Hopkins Teen Central model to hospitals across the country. Access the Dreamsurfer Network at www.dreamsurfer.org.


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