In the U.S., more than 1,700 children receive organ transplants each year. Following transplantation, they must take immunosuppressants and steroids to protect their transplanted organ from being attacked by their own immune system.
But transplant teams know that kids are 60 percent more likely than adults to struggle with keeping a strict medication schedule. That puts the longevity of donated organs — and the lives of organ recipients — at unnecessary risk.
This challenge inspired a team of pediatric transplant experts at the Boston Children’s Hospital to develop a mobile application for smartphones that could serve as a portable reminder and a resource to support medication adherence.
“Medication adherence is a huge factor in the life of a graft,” says Kristine McKenna, PhD, a transplant psychologist at Boston Children’s who designed the app with Vivonics, a Massachusetts medical technology company, and Jennifer Gilarde, PharmD, a transplant pharmacist at Boston Children’s. “It’s a huge health behavior change that we ask patients to embrace. Teaching organ recipients to properly and promptly take their daily medications helps to preserve the life of the organ and to improve their quality of life.”
Struggling against busy schedules
Part of the challenge is the fact that teens and young adults see organ transplant as a way — finally — to participate in life more fully. But time-sensitive, daily medication routines can seem like a brand-new type of interference with school, sports and social schedules.
“Many patients have been taking medications for a long time, but not with the same strict schedule requirements as immunosuppressants,” says McKenna.
Although other medication adherence apps exist, they vary in the level of active user participation, and none are specific to the needs of young organ transplant recipients. To ensure medication adherence, the app interacts with near field communication (NFC) tags that are embedded in specially-designed pill boxes. When patients tap their phone to the pill container, the NFC tags automatically document the time they take their medication.
Even more importantly, the app isn’t just a reminder system: follow-up prompts and helpful tips teach teens and young adults how to solve the problems that can interfere with their medication schedule.
Nipping medication issues in the bud
McKenna says that traditionally, the only chance for the medical team to address issues related to medication adherence is during routine clinic check-ups. But it’s difficult for anyone, let alone busy adolescents, to remember the details of specific days that are weeks or months in the past.
“Asking someone, ‘How has it been taking your meds the past few weeks?’ is going to get you a fuzzy answer,” says McKenna. “More importantly, the problem has already occurred and it’s too late to prevent past medication slip-ups.”
That’s why McKenna wanted the app to do the problem solving in the moment. If a patient misses a dose, the app asks troubleshooting questions and provides helpful prompts, such as directing them to call a parent if they’re out of the house and have forgotten their medication, or how to cope if they are feeling nauseous at the time they are supposed to take a dose of pills.
“We put this sort of in-the-moment guidance on the app because we can’t be with patients 24/7,” says McKenna. “And neither can their parents. A big piece of this puzzle is empowering teens and young adults to become more independent in taking care of their own health for the long haul.”
Parents and clinicians can, however, use login credentials to view the app’s medication log, which allows them to support patients, identify trends and discuss changes in medication schedule to compensate for recurring conflicts brought on by particularly busy times of a patient’s day.
If life is a pie, organ transplant is just a piece
The app is designed so that, over time, as patients become more confident and skilled at navigating their medication schedules, some of the in-app guidance and caregiver-monitoring functions can be scaled down.
A pilot study will launch soon at Boston Children’s, recruiting eligible patients to test-drive the app for several months. Users can provide feedback to fine-tune the app before it is rolled out to a larger base of young transplant recipients.
“Sometimes, patients can feel like so much focus is on the organ transplant that it’s the biggest piece of their ‘pie of life,’” says McKenna. “But they have so much going on outside of their transplant — there are lots of slices making up the pie.
“Our main goal is for patients to be able to engage in the other things in their lives that make them who they are,” McKenna adds. “That’s a huge part of the motivation for this app — to keep patients on track with their medication so that they can be their best and healthiest selves.”