Transplant day is a joyous milestone for children and families who’ve been through a difficult illness. But the healing does not end when the new organ is in place—in fact, that is when the real work begins, according to Dr. Jodi Smith, Medical Director for the Kidney Transplant Program at Seattle Children’s.
“One of the biggest factors in a successful transplant is for the patient to follow a careful regimen afterwards so the new organ can do its job,” said Smith. “Patients often struggle to maintain their health after a transplant and need extensive support.”
To help with this problem, Dr. Smith’s transplant team is working with Dr. Jane Dickerson and Dr. Michael Astion from the Department of Laboratories on a pilot for a digital program from that focuses on the follow-up care for transplant patients at Seattle Children’s, which has one of the highest-ranked kidney transplant programs in the country.
The program provides a web-based platform that helps healthcare providers monitor, support and care for patients following transplant surgery. The initial pilot is focused on new kidney transplant patients, and if the program does well, it may be expanded to include additional organ transplant patients.
Seattle Children’s Hospital performs between 20-25 kidney transplants each year and is one of the top five pediatric kidney transplant centers in the nation by volume. The transplant teams care for patients across the Pacific Northwest and Alaska. Some patients run into difficulty remembering medications, getting important lab tests and going to appointments. This can contribute to medical complications, including rejection of the new organ.
Currently, kidney transplant patients receive a binder of materials, which can contain an overwhelming amount of information. The Health123 pilot makes the binder digital, interactive and accessible by computer, smartphone and tablets. The program curates content and presents families with the most relevant information when they need it. It also allows patients and healthcare providers to communicate in real-time.
“We know the paperwork that goes home with families after transplants isn’t working for everyone,” said Astion. “This is a great way for transplant teams to communicate with patients near and far using tools they already have at home and use all the time—computers and smartphones.”
Healthcare providers will also be able to measure which patients are complying with post-transplant care directions and which patients are having trouble remembering what they need to do.
“If a patient is great about remembering to take a medication and scheduling lab work, we don’t need to be as hands-on with that family,” said Astion. “But if we notice some patients struggling to keep up with care, our transplant teams can give those families extra support and reminders through this platform.”
Because families and kids are already on phones and computers, the hope is that more engagement on these platforms will lead to better post-transplant care compliance and outcomes.
“We’re excited to try this digital platform as another way for us to support these patients,” Astion said.