After an organ transplant, patients need to adjust to a lot of strict routines. This is hard, especially for teenagers who are trying to navigate adolescence. Some young patients say it’s difficult to remember when they need to take all their medications to prevent organ rejection, especially when they’re not feeling ill. Others complain that their parents’ constant harping to follow their care team’s instructions makes them want to do the exact opposite.
No matter the reason, thousands of teenagers are at risk of compromising their grafted organ.
Researchers at Boston Children’s Pediatric Transplant Center are developing a smartphone application that they hope will help adolescents understand the importance of taking care of themselves. But they realize that it’s not enough to take a clinical approach and it give an app makeover. In other words, to truly make an impact on teenagers, the app needs to be more than an electronic version of their parents.
“We really need to create ways to communicate with young patients that’s right for their age and treatment stage,” says Kristine McKenna, PhD, a psychologist with the Pediatric Transplant Center. “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.”
McKenna, along with 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, which aims to take the standard tools of psychology—psychological interventions, cognitive behavioral therapy and problem solving—and make them available to teenage transplant patients via their phones.
The researchers suspect if these patients have an app that helps them identify their personal barriers to adherence it could be very beneficial in helping them manage their health and deal with problems that arise—provided the app speaks to them directly, in a language and format they understand.
McKenna and her colleagues spent weeks working closely with teens in the End-Stage Renal Disease Program at Boston Children’s to get further insight into their needs and wants, asking them what they’d find useful in an adherence app, and what they’d find patronizing.
“We learned right away 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.”
Based on their research, McKenna and her team have designed an app that enables teens to monitor treatment schedules, provides advice for what to do when adherence becomes difficult and offers positive reinforcement when things are going well.
Since the research also suggests that the application’s functions should be tailored not just towards a user’s age, but his treatment stage as well, McKenna foresees an app that evolves with its user. 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.
Shortly after surgery, the app will do a lot: send patients alarms and text message reminders to take medication at certain times, provide multiple check-ins with parents or care team members and give plenty of information on why adherence is so important. Over time, if the user is maintaining adherence, these features will occur less often. If he starts to slip, their frequency will increase again, 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. 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.