Website Helps Kids Talk About Inflammatory Bowel Disease
MADISON - Dr. Sumona Saha (pictured) believes that social media might have a cure for a troubling problem she noticed a few years ago among her young adult patients with inflammatory bowel disease.
"The kids old enough to drive still had their parents driving them to their appointments," she said. "When I would ask the patients about their condition, it was still the parents who were responding. This was a big problem, and I knew we had to do something."
Saha, a UW Health gastroenterologist, was concerned that young people on the cusp of adulthood were too dependent on parents to manage their disease. Now Saha and colleagues have created a website to help young people deal with a disease that often causes pain, fatigue and potentially embarrassing symptoms for those it affects.
The site is available only to UW Health IBD patients 11 years and older, if their parents sign a consent form. Saha says about 40 percent of adolescents treated for IBD are signed up, and by the end of the month, they should receive usernames and passwords needed to gain access.
Inflammatory bowel disease is a gastrointestinal illness that causes abdominal pain, diarrhea, and other difficult symptoms for its patients. It has also been linked to depression, anxiety and social isolation. About 25 percent of those diagnosed with IBD are children and teenagers.
The site contains blogs that are age-group specific - 11-13 years old, 14-16 years old and 17 years and older - and allow the patients to communicate with their peers on how to cope with the disease. The site also offers webinars, videos and interactive tools to help kids in each age group learn how to manage their IBD through diet and medication.
Patients will be allowed to communicate only with peers in their own age group. Administrators will oversee the online discussions and make sure its material is appropriate.
"Parents will be able to view the general website, but we are really striving for the blogs to be a parent-free zone, so that the adolescents can feel free to discuss issues concerning them," says Saha, who is also an assistant professor of medicine at UW School of Medicine and Public Health.
"Adolescents are not mini-adults; we need to think of them as their own unique patient population. We want them to take charge of their disease, so when they are ready to transition into adulthood, they feel more comfortable with their disease, they are proactive, and they are not relying on their parents to speak on their behalf."
Saha believes use of an interactive Web site to offer guidance to children with IBD will be more appealing than the use of brochures and other written materials that often are never read or discarded.
The project was funded through ambulatory care innovation grants from UW Health and Physicians Plus Insurance.
"Health care is far behind in using social media to promote healthy behaviors," says Saha. "Our patients have been looking for something like this, and they want to get involved in this virtual clinic that we've created."
Date Published: 03/23/2011