Emma hopes to keep young IBD patients on track

About 25 percent of people with inflammatory bowel disease (IBD) are diagnosed before age 18. A critical part of pediatric care is educating young patients about their disease and giving them the tools and resources needed to transition to independent self-management. Yet there are few recommendations to guide the transitional process and little information about its effectiveness.

"Good physicians talk to their patients, but children don't always listen or understand what's being said," says Jeanne Tung, M.D., a pediatric gastroenterologist at Mayo Clinic in Minnesota. "So we end up talking to the parents, but we need to educate at both levels, and the problem is we don't know how much the child knows or has absorbed."

Emma app

That's a problem a new iPad app called Emma is designed to address. The interactive game incorporates 12 questions per session that test young patients' knowledge of IBD-related topics, including anatomy, tests for IBD, nutrition and medications. Intended for patients ages 10 to 18, the questions become progressively more difficult as children grow. Emma also asks patients to rate their quality of life and emotional health each time they play the game.

Dr. Tung explains, "The idea is that when kids arrive at the clinic, they are handed the iPad and enter some nonidentifiable, patient-specific information such as age, sex, type of IBD and medications. That starts the game, which consists of launching a rocket across an island with the goal of traveling the furthest distance. The nurse or physician then reviews the questions and decides what the teaching points that day should be."

The game takes just minutes to play and should not interfere significantly with normal office routine. The iPad itself remains in the clinic and is handled only by designated medical staff.

Originally designed by the Center for Creation of Economic Wealth at the University of Oklahoma under the direction of pediatric gastroenterologist John E. Grunow, M.D., Emma is now being further developed by Dr. Tung in collaboration with the university. "It's still in the research phase, but we have actually been able to assess what kids know and to review things with it," she says. "So far, the feedback has been that the questions are satisfactory to challenging, and the game is too easy, so making the game more sophisticated and challenging is a major goal."

Despite older patients scoffing at the game's rudimentary technology, overall results seem positive. "We review the questions with the kids and can then say, 'That was hard. Let me teach you something,' " she explains. "It's nice because we have direct teaching opportunities. And we hope that means patients pay more attention during office visits and that when they leave, they are interested in learning more by reading online and more interested in taking ownership of their care. And, if we see a lot of patients answering a question incorrectly, we can change the emphasis in our teaching in our IBD clinic."

Dr. Tung adds that they were able to identify four patients in urgent need of psychological help using Emma and that preliminary results found no relationship between level of knowledge and type of IBD. She points out, however, that a patient's level of engagement generally depends on age, personality and disease activity level. "You would think a child who is sicker would be more engaged, but it's hard to say. Sometimes parents are shielding those children more. What is interesting with the game is that parents don't help. They're kind of looking over the child's shoulder, but they don't interfere and give the answers."

Dr. Tung stresses the importance of helping children become more knowledgeable and independent when they are younger so they have a strong foundation when they leave home and transfer to an adult provider. "We know from the literature that young adults are likely to fall off the wagon when they leave for college," she says. "They have very busy lives and a different level of stressors, they have to manage their own finances and insurance, and they're not near parental support — that's a time they may stop taking care of their health. And that's what we hope to prevent."