Tom Manatos and Dana Edwards Manatos‘ 8-year-old son, Andrew Manatos, was diagnosed with Type 1 diabetes just a few days after his 7th birthday.
The couple did not know much about diabetes, not having any family or friends, albeit that young, with the condition.
Like most families in the same situation, they had a huge learning curve ahead of them before they fully understood their son’s diagnosis and how to manage it.
About a year into their son’s diagnosis, they were asked by the Children’s National Health System in Washington D.C. to join a study utilizing health coaches over a 10-week period to help families navigate care for children with Type 1 diabetes.
“When Andrew was first diagnosed with diabetes, looking back, we were pretty naive and didn’t know much about managing it,” recalls Edwards. “We loved the idea of being apart of a trial to help us understand diabetes more and take our understanding to the next level.”
The family joined a program, led by Dr. Fran Cogen, director of diabetes care at Children’s National, that aimed to help pediatric patients with Type 1 diabetes manage their glycemic status or blood-sugar control using health coaches and incentives.
How was the Study Conducted?
Cogen’s study was offered at no cost to caregivers of 179 patients at Children’s National seeking treatment for Type 1 diabetes.
The program included two components: 1. Weekly phone calls or e-mails from a health coach to a caregiver with personalized insulin adjustments, based on patient blood sugars submitted through continuous glucose monitoring apps; and 2. Incentives for patients to participate in the program and reach health targets.
Twenty-five participants, ages 4-18, with a mean age of 11.6 and A1c ranges between 8.6 – 10% joined the study.
The average A1c was 9.4% at the beginning of the program and dropped by an average of .5% at the end of the trial.
Twenty of the 25 participants, 80%, improved A1c levels by .5%. Seventeen participants, 68%, improved A1c levels by more than .5%, while seven participants, 28%, improved A1c levels by more than 1%.
Coaching for the patients was conducted at no cost via phone call and e-mail. It was individualized based on family needs and conducted by diabetes team members.
Families who participated received a gift card to a local grocery store, supporting a child’s dietary goals. Children who participated were also entered into an iPad raffle. Improvements in A1c levels generated extra raffle tickets per child, which motivated participants, especially teens.
“Chronic disease is like a marathon,” says Cogen. “You need to have constant reinforcement and coaching to get people to do their best. Sometimes what drives people is to have people on the other end say, ‘Keep it up, you’re doing a good job, keep sending us information so that we can make changes to improve your child’s blood sugar management,’ which gives these new apps and continuous glucose monitoring devices a human touch.”
Instead of waiting three months between appointments with their endocrinologists to talk about ways to make changes to support a child’s insulin control and function, caregivers received feedback from coaches each week.
“Especially as a family that’s relatively new to Type 1 diabetes, we got a lot of education up-front and had the ability to bounce of questions, ideas, methods on a regular weekly basis,” says Manatos, “That has fast-forwarded our understanding of diabetes management incredibly so, so much that 6 months after the trial ended, our doctor told us our son’s A1C level was one of the best she’d seen for someone his age, 1-2 years into the diagnosis.”
Manatos credits their son’s success largely to the education they received during the trial. “The constant back and forth, asking questions about nutrition, insulin, exercise, you name it, was invaluable,” he adds.
Cogen says the incentives used in the study were helpful in order to get kids engaged in their health and in an immediate way.
“Teenagers aren’t always interested in long-term health outcomes, but they are interested in what’s happening right now,” Cogen says. “Fluctuating blood sugars can cause depression and problems with learning, while increasing the risk for future complications, including eye problems, kidney problems, and circulation problems.”
Dr. Cogen and her team of health coaches. Image courtesy: Children’s National Health System.
As health care providers, Cogen says they know the choices children make today can influence their future health outcomes, which is why she and her team designed the study.
Moving forward, Cogen and the endocrinologists at Children’s National would like to study the impact of using this model over several months, especially for high-risk patients, while asynchronously targeting information to drive behavior change – accommodating the needs of families, while delivering dose-specific recommendations from health care providers.
Cogen adds, “We’re moving away from office-centric research models and creating interventions where they matter: at home and with families in real time.”
Cogen will share results of the pilot program as poster 1260-P, entitled “A Clinical Care Improvement Pilot Program: Individualized Health Coaching and Use of Incentives for Youth with Type 1 Diabetes and their Caregivers,” at the American Diabetes Association’s 79th Scientific Sessions, which takes place June 7-11 at the Moscone Center in San Francisco.
As for Andrew’s parents, they are thankful to Cogen and her team for continuously finding ways to think outside of the box to help pediatric patients with diabetes.
“I highly recommend the program,” Edwards says, “It was a group effort, between us, our son, and the experts. Everyone knew what was going on, and figuring out all the little details in the management of blood sugar, was invaluable.”
As for the future, Edwards says if she could, she would sign up for a health coach tomorrow to help guide them through the next set of changes their son will go through as his body continues to grow.
Feature image: A health coaching session. Image Courtesy: Children’s National Health System.