After an organ transplant, patients need to adjust to a lot of new routines. Medications need to be taken regularly, often at very specific times, to avoid rejection. Eating well and getting enough sleep and exercise becomes essential. Adhering to these changes isn’t always easy, but it’s crucial for maintaining proper health after transplant.
But in the transplant community, thousands of teenagers are at risk of compromising their transplanted organ, because they often have a harder time adhering to these new routines than adults. Some young patients say it’s hard to remember when to take their so many medications, especially when they’re not feeling sick. Others complain that their parents’ constant harping to follow all their care team’s advice makes them want to do the exact opposite.
No matter the reason, one thing is clear: adolescence is hard for many young people; adding the stress of a chronic illness and strict medication routine can make it even harder.
“We know that adherence is a major issue for teens and young adults, which puts them at increased risk for graft [transplant] failure,” says Kristine McKenna, PhD, psychologist at Boston Children’s Pediatric Transplant Center. “So we’re looking for new ways to help them manage their health, by focusing on technology and tools they’re familiar with.”
To do so McKenna and her Boston Children’s Hospital colleagues Melisa Oliva, PsyD, Laura Simons, PhD, and Jason Kahn, PhD are participating in a large research project in conjunction with Ron Blount, PhD, of the University of Georgia.
As part of the project, researchers are looking for ways to take the tools of their trade—psychological interventions, cognitive behavior therapy and problem solving—and make them available to teenagers via mobile apps. The hope is that an app that teens have steady access to would help them identify and work around their personal barriers to adherence as problems arose.
But as McKenna points out, it’s not enough to take a clinical approach and it give an app makeover; to truly reach the audience, medical professionals have to create a product that speaks directly to young patients, in a language and format they understand.
To do this, McKenna and her colleagues spent weeks working closely with teens in the End-Stage Renal Disease Program at Boston Children’s, asking them what they’d like to see in an adherence app. The insight provided by these potential users proved very helpful.
“We learned right away was that this app needed to be very interactive,” McKenna says. “A medication reminder is nice, but kids are already setting alarms on their phones to do that. We need to take the reminders and other features to the next level.”
“We really need to create ways to communicate with young patients that’s right for their age and treatment stage.”
With their teenage patients’ advice in mind, McKenna and her team have designed their app to include help monitoring their treatment schedule, advice for what to do when adherence becomes difficult, and positive reinforcement when things are going well.
McKenna says it’s also important that these apps aren’t just geared to patients of a certain age, but also tailored for each level of treatment. For instance, a 16-year-old who just received a new kidney is going to be functioning on a different level of independence than a 14-year-old who has been living with a transplant since infancy.
“We really need to create ways to communicate with young patients that’s right for their age and treatment stage,” she says. “If you’re too patriarchal, or if you try to dumb things down too much, teens pick up on that and resent it. But if it’s too high-level they can become overwhelmed. To boost adherence rates in adolescents we need to reach them in a way that’s appropriate for them, values their input and helps them understand the importance of taking care of themselves.”
Though it’s still in the development stage, McKenna foresees an adherence app that changes with the user. Shortly after surgery the app will do a lot: alarms and text message reminders to take medication at certain times, multiple check-ins with parents or care team members and plenty of information on why adherence is so important. Over time, if the user is maintaining adherence, these features will happen less often. If he starts to slip, their frequency will increase again, adjusting to match the users’ behavior and helping him identify and deal with his adherence issues as independently as possible.
It may sound like a lot of responsibility for a young person, but McKenna says most adolescents—including those living with significant health problems—crave that independence, assuming they have a little guidance from a trusted adult or two. She compares it to teaching a teenager how to drive. “You don’t just give a 16-year-old the keys to a car and say ‘have at it.’ You teach them some basics, enroll them in driver’s education, go for rides with them after they get their permit and so on,” she says. “Learning how to manage your medical care is very similar. Our goal with the app was give them a tool that will teach and evolve with them as they learn.”
McKenna says the team will continue to work on the beta version of the app over the coming months with plans for continued feedback from the adolescent patients prior to it formally being launched.
Boston Children’s has already entered the app-mosphere with Boston Children’s MYWay: a way finding app that lets users navigate their way around the hospital and satellite locations, get information about doctors, restaurants, hotels and other local attractions. For a free download of Boston Children’s MyWay, simply click here and choose the link for Android or iPhone.
For more on how mobile technology is changing the face of medicine and parenting, read these blogs: