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"Give them a voice, and they will talk," lead author Dr. Jeannie Huang told Reuters Health. "And that's really what we want them to do."
Huang, from the University of California, San Diego, said her study shows that using the Internet and cellphones to communicate with youths has the potential to get them earlier care and improve outcomes.
"How do you reach people who don't come into the clinic?" she said. "Mobile technology is a great way because it's meeting teens in their own space."
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"Kids want to fit in. Oftentimes they don't want to bother people. They often come into the hospital very sick. If they tell me early, we can keep them out of the hospital," she said.
Huang had frequently seen teens with chronic gastrointestinal problems wait a dangerously long time to seek care for symptoms. She and other doctors who treat adolescents with chronic illnesses say those delays are especially common as young adults move from being pediatric patients into adult medical practices.
Interventions to prepare young people for that transition have been designed for individual chronic diseases. But they have not always succeeded, and they have been expensive and labor intensive, the authors write in Pediatrics.
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Huang and her colleagues designed a single education and communication tool called MD2Me in an effort to help young adults with all chronic diseases transition smoothly into adult healthcare.
The researchers studied 81 adolescents between 12 and 20 years old with diabetes, cystic fibrosis or inflammatory bowel disease. Half participated in MD2Me. The rest received health-management materials in the mail and served as a control group.
The intervention included two months of intensive Web-based and text-delivered education on general disease management. Tutorials addressed subjects like how to refill prescriptions, how to monitor symptoms, how to obtain health insurance and how to talk to doctors and friends about chronic illnesses.
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In comparison to controls, the MD2Me participants showed significant improvements in all targeted outcomes when tested eight months after the start of the study, the researchers found. The teens demonstrated that they were significantly more capable of managing their disease, and reported feeling more confident in their ability to advocate for themselves.
Moreover, MD2Me recipients initiated an average of two requests for medical help over eight months, while the controls initiated none.
"It was a great medical engineering effort," Huang said. "My dream would be to offer this to all youth in the hospital."
The tool did not have an effect on the severity of young people's disease or on their quality of life - though those were not specific goals of the program, the authors note.
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Dr. Mark Applebaum told Reuters Health that Huang's program delivered what teens told him they wanted during focus groups in San Francisco. They said they preferred to communicate by text message, and they asked for an online health-management program.
Applebaum, from the University of Chicago, was not involved in the current study. He described the new program as "a very good step in the right direction to show that this is a useful line of work and that we can really make changes in the ability for teens to take control of their health."
"Their program really did make a positive impact on the patients' self-efficacy," he said.
"What the study really proved is that the issues children with chronic illness face are universal - how to call the doctor, when to call the doctor, how to get medication."
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Huang believes that one of her patients, a young man with inflammatory bowel disease, might have died had he not been participating in the MD2Me program. The patient had developed sepsis, a severe, body-wide response to infection. He texted for help when he first noticed symptoms, got advice and immediately sought life-saving care, Huang said.
She said she was sad to have to disconnect the MD2Me program at the end of the study when funding ran out.
"It's too bad the system was shut down," Applebaum said. "I think it has potential to help teens know more about their illness, know how to better track and treat their illness and how to get help when they need it."
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As more young people with chronic illnesses live into adulthood, helping them transition into managing their own care in the adult system has become an increasingly pressing need, Applebaum said.
"For patients with chronic illness, once they turn 18 or go to college, their health status often deteriorates," he said.
"If you leave a voicemail on a teenagers' phone, they're likely not to check it for a month," he said. "The teens vastly prefer text messaging."
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