June 2008

A Network of Friends

Using the Internet, teens with cystic fibrosis reach out to each other

As their peers deal with issues like curfews, homework, and driver’s licenses, teens with cystic fibrosis (CF) are coping with a host of serious issues. The usual challenges of adolescence are compounded by their need to manage a strict regimen of medication, diet, and physical therapy.

Because CF heightens risk of infection, teens are isolated from those who could give them much needed support: other teens with CF. But now, with help from EDC, they will be able to connect via the Internet.

“We are reproducing the benefits of a support group without the danger of cross-infection,” says EDC’s Walter Robinson. “The kids will have access to each other and be able to compare notes, helping them transition their treatment from ‘mom and dad do it’ to ‘I do it.’”

The teens (ages 13-15) will create short videos dealing with different aspects of managing their disease. The topics for the videos come from conversations with teens and their parents seeking treatment at Children’s Hospital in Boston and Baylor Medical Center at Dallas, and include subjects ranging from how to take medicine at school to dealing with overbearing parents. Each month, the teens will meet online to share and discuss the videos.

“They will be the teachers because they are the experts. All we ask is that they talk about their own experiences and have fun in doing it,” says Robinson. He adds that staff will review all the videos to make sure the information the teens are sharing with each other is medically accurate.

Robinson is researching the effectiveness of this video-based model and hopes to apply it to people managing other medical conditions. “It was important to start with CF because we know what many of the problems the kids will face are and, unlike other diseases where the kids can get together, with CF they have to stay away from each other, so they don’t have access to the one person who understands what they are going through.”

Once fatal in early childhood, new treatments are enabling those with CF to live into their thirties and forties. Most follow a daily treatment that can include more than 40 pills and an hour and half of physical therapy. “The disease is waxing and waning, and the kids in the project are pretty healthy, but they still must do the treatment program every day. As they transition from childhood to adulthood, they must learn how to take care of themselves,” says Robinson.

This three-year project is funded by the U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Child Health and Human Development. For more information contact Walter Robinson (wrobinson@edc.org).

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