Thanks to pediatric solid organ transplantation, up to 80 percent of children are surviving for more than 10 years, studies show. For many of these young transplant recipients, however, non-adherence to medications and other medical recommendations has become a significant and, in some cases, life-threatening issue.
“We know that teenage and young adult transplant recipients have significant medication compliance challenges as they become increasingly independent,” says Johns Hopkins pediatric gastroenterologist Douglas Mogul. “With that there are much higher rates of graft failure across all organs.”
To reduce these rates and help preserve solid organ transplantation as a life-saving therapy on a broad scale, Mogul has been looking to technology for solutions. A savvy tech geek as well as a pediatric liver specialist, Mogul has already advanced parents’ detection of biliary atresia—the leading cause of liver failure in children—through a digital color stool guide accessible through an app. Now, in an initiative he calls “Digital Wings,” he has a new tech target.
“My first goal is to explore options for how we could use a digital tool to help teenage solid organ transplant recipients better manage their transplant and transition to adult care,” says Mogul. “There’s evidence that if you can prepare adolescents and young adults early on, they’ll be much less likely to have complications.”
In kicking off the initiative at Johns Hopkins Children’s Center on Feb. 2, Mogul sent a message that this would hardly be a solo crusade. In addition to families, patients and transplant advocacy groups, he invited seasoned leaders from various fields—including medicine, behavioral psychology, technology, gaming and augmented reality—to a multi-stakeholder symposium to strategize design and development of the best possible digital tool. Topics included leveraging technology to support adherence, using social media to manage chronic diseases, and understanding gamification, or the application of game-design elements to make existing tasks feel more like games.
“This is a collaboration of people, each with unique skills, but together likely have the best chance of creating a useful digital tool,” says Mogul. “Creating a digital tool is the easy part—the real challenge is creating a tool that people download, continue to use appropriately, and changes their behavior so they can independently manage their transplant.”
While Mogul characterizes the conference as a conversation starter, he cites innovative concepts that surfaced from this diverse group.
“Among the biggest ideas was the digital buddy,” says Mogul of a digital strategy proposed by patient advocate Natalie Williams. “She showed us the value of teenage transplant recipients being paired with each other.”
Others agreed the cross-section of viewpoints made the discussions that much more informative and valuable in addressing adherence issues.
“In bringing together outstanding representatives from the medical, patient and advocacy communities, this conference was the ideal prototype and forum for collaboration with these important groups,” says Thomas Nealon, chief executive officer of the American Liver Foundation.
“This truly was an excellent conference, bringing together a diverse group of people invested in improving long-term outcomes for pediatric solid organ transplant recipients,” says University of Michigan psychologist Emily Fredericks. “Hearing from parents and young adult recipients was both humbling and inspiring.”
“Digital Wings provided an incredible opportunity to explore new strategies with different stakeholders and to think outside the box about adherence issues,” says Johns Hopkins pediatric nephrologist Tammy Brady. “Presenters introduced many emerging technologies that have great potential to improve the way we engage and educate our adolescent transplant recipients, particularly as they transfer their care to adult providers.”
“I thought the conference was incredibly valuable,” adds Johns Hopkins pediatric cardiologist William Ravekes. “I walked away from it thinking we put all the blame for poor adherence on the patient when we should be putting some of the burden and blame on the health care system.”
Next steps, says Mogul, include incorporating insights from the data into a survey for teenagers to help determine what types of digital tools they are most likely to use. Mogul plans to hold a follow-up conference in the fall to discuss ethical issues related to the use of digital tools by transplant recipients, potential pilot studies, and new data on leveraging technology to promote adherence. Mogul says, “We’ll also present a menu of ideas for teenagers and young adults, to see which ones they see as most impactful.”