At age 10, Safa needed a tonsillectomy at Children’s Hospital of Wisconsin. During pre-surgery meetings with their doctor, Safa’s parents were given instructions on when she should stop eating, when to arrive for surgery and what to expect. But instead of being overwhelmed with information, Safa’s mom and dad received regular text messages through Children’s Hospital of Wisconsin’s Patient Journey mobile service. The messages reminded them in real time of what they needed to know, giving them peace of mind and letting them focus on their daughter.
Eight-year-old Orion has type 1 diabetes, which means his blood glucose, food intake and insulin dosing need to be closely monitored. Like most kids, he has multiple caregivers, including parents, grandparents and a school nurse. An app Children’s Hospital of Wisconsin helped develop lets Orion’s caregivers track his glucose levels and make sure his insulin dosing is accurate regardless of whether he’s at home, school or on the football field. The information goes to his doctors too, so everyone can work together to keep Orion healthy.
Baby Leo, age 2 months, is at home in-between two lifesaving heart surgeries to repair his condition of hypoplastic left heart syndrome. Monitoring his feedings, weight, heart rate and oxygen level is critical to his survival. Leo’s parents enter information into an app, making it instantly accessible to his care team in the Herma Heart Institute at Children’s Hospital of Wisconsin. If anything looks unusual, the app indicates parents should notify the care team and together parents and providers determine the next steps. In the meantime, Leo can be at home with his family.
In today’s fast-paced world, families are juggling an ever-expanding set of responsibilities and communications. Modern families come in all shapes and sizes — working parents, single, divorced or separated parents and multiple generation families. Kids are cared for by families as well as teachers, nurses and child care workers.
That hasn’t changed is the fact that parents still put their kids’ health at the top of their to-do lists. Mobile technologies developed at Children’s Hospital of Wisconsin are meeting the needs and expectations of millennial families, putting apps that help them track and improve their children’s health on their smartphones and at their fingertips.
40,000 kids are diagnosed with type 1 diabetes each year in the United States, and Children’s Hospital of Wisconsin sees the highest number of pediatric diabetes patients in the state.
Diabetes is a life-changing disease. Many parents feel overwhelmed when they learn how much of their child’s health information needs to be tracked on a daily basis, and how much diet and meal planning is required. Monitoring blood-glucose and carbohydrate intake is critical for accurate insulin dosing to manage the disease.
Anne Horak, mom of 8-year-old Orion, is a nurse by profession, and even she admits there’s a lot to keep track of. “In the beginning, we wrote down all of Orion’s numbers multiple times a day, then I took a picture of the paper chart and sent it to our care team. It was a lot of steps.”
The BlueLoop app removes arduous record keeping and offers families and other caregivers a way to easily log blood glucose levels and accurately dose insulin. Information can be shared with anyone parents choose, and is reviewed by the Children’s Hospital of Wisconsin diabetes team prior to check-ups or whenever parents have a question.
“The best part is that we can log his numbers anywhere – at his grandparents’ house, out to dinner, or at football practice,” said Anne. “My husband and I both work full-time, plus we have a 3-year-old, so we’re always on the go. Now, I’m not looking for pen and paper, I just pull out my phone and it’s done.”
Orion’s care team has immediate access to his numbers. “If I need to call and discuss adjusting his insulin dosage, all of the data is right there,” Anne said.
As kids get older, they can use the app themselves to log their blood glucose levels and carbohydrate intake, empowering them to take charge of their own health. Kids can test their blood sugars from their desks at school, and parents receive immediate notifications.
The BlueLoop app was developed by Pam and John Henry following their daughter’s type 1 diabetes diagnosis, then modified with the help of Children’s Hospital of Wisconsin to include additional functionality. The app continues to be improved and updated based on input from patient families.
Cecile Sulman, MD, an ear, nose and throat specialist at Children’s Hospital of Wisconsin, understood why parents sometimes didn’t follow critical steps when preparing their kids for surgery. “There are a lot of directions to remember, and when you’re worried about your child, it’s easy to forget.”
Dr. Sulman helped create a mobile service that sends text messages to parents before, during and after surgery, reminding them of pre-surgical directions, letting them know how surgery is progressing and reassuring them of common post-surgical symptoms and how to treat them. When the app was launched in 2015, Children’s Hospital of Wisconsin was the only health system sending messages before, during and after surgical procedures.
“The reminders helped us so much,” said Kauser Ravzi, Safa’s mom. She added that seeing the text messages was comforting during a stressful time.
“The app gave us an understanding of the whole process,” said Safa’s dad, Arjumand Razvi. “It smoothed the way for us. After all, she’s our baby.”
Results from the tonsillectomy team show that after Patient Journey started to be used, fewer surgeries were cancelled because of failure to follow orders or guidelines, there were fewer patient “no shows” for appointments, and there were fewer unnecessary urgent care visits in the postoperative phase.
Now, Patient Journey is being used in multiple areas of the hospital, including kidney transplant, liver biopsy and heart catheterization.
“By giving parents easy-to-understand communications when they want and need them, we are helping improve the standard of care and putting parents’ minds at ease, as well as avoiding unnecessary trips to the doctor,” said Dr. Sulman.
Thirty years ago, babies born with hypoplastic left heart syndrome (HLHS) rarely survived. Since then, specialists within the Herma Heart Institute at Children’s Hospital of Wisconsin have established the worldwide standard of care for the defect that includes three surgeries performed in the first several years of life, achieving some of the highest survival rates in the country.
For children like Leo who are diagnosed with HLHS, the period between the first two surgeries is critical and requires close monitoring. Doctors within our Herma Heart Institute pioneered “interstage” heart monitoring, developing complex and effective protocols for measuring weight, food intake, heart rate and oxygen levels and intervening as needed. The next step was to work with parents to allow babies to be home during the interstage period — but this required detailed record keeping that held the potential for error.
William Clarke, MD, a pediatric anesthesiologist at Children’s Hospital of Wisconsin, wanted to simplify the interstage process for parents. Working with patient families, Dr. Clarke and the interstage team helped develop the Interstage Home Monitoring app.
Now, instead of a huge binder of papers and a flurry of telephone calls, Leo’s parents log measurements into their smartphones. “Using the app greatly reduces potential mistakes in calculation and recording,” said Dr. Clarke, “allowing parents and doctors to focus on the child’s health and not spend time second guessing the accuracy of the data.” The data is immediately accessible to the child’s care team, who monitors it.
Leo’s parents, James and Erin, say the app made a difficult time less difficult. “It took some of the stress and pressure off a very stressful situation,” said Erin.
For this millennial couple, learning to use the app was a cinch. “It took no time at all to learn the app, and entering Leo’s numbers was easy,” said James. The numbers were sent directly to Leo’s care team — eliminating the need for lengthy phone calls to detail Leo’s vitals, and allowing the team and Leo’s parents to focus on him.
“The app doesn’t replace the communication we have with Leo’s team, who are available to us 24/7,” emphasized James, “it just made it more efficient. When we called his team, they already had a clear picture of his health status.”
Leo survived the interstage period and came through his second surgery with flying colors. “We’re so grateful to the team that is always there for us,” said Erin.
What’s next at Children’s Hospital of Wisconsin when it comes to groundbreaking apps? Time will tell, but it’s certain that the organization will continue to look for ways to innovate and use technology to make care better and safer through seamless communication with parents and caregivers.