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Type 1 Diabetes: Improving Care and Quality of Life

Type 1 diabetes (T1D) is an auto-immune disease that develops when the body’s immune system destroys insulin-producing pancreatic beta cells; it requires around-the-clock care management. Without treatment, people face a lifetime of risks, such as heart disease and kidney disease.

More than 18,000 new cases of T1D are diagnosed among young people in the United States each year, according to the American Diabetes Association. Children’s Mercy treats more than 2,100 individuals with T1D.

“When I started as an endocrinology and diabetes fellow 12 years ago, I started spending time with families and quickly realized how much of a cage T1D can be,” said Dr. Mark Clements (pictured left), pediatric endocrinologist, Children’s Mercy. “Every hour, of every day, these children and families are dealing with the disease. There’s no day off. We need to do better as health care professionals and work together to really improve the quality of life for T1D patients.”

T1D Exchange Quality Improvement Collaborative

As part of its commitment to patients, Children’s Mercy teamed up with T1D Exchange, a nonprofit research organization dedicated to accelerating therapies and improving care for people living with T1D. Providers from 10 diabetes centers around the country, which includes Children’s Mercy, formed the T1D Exchange Quality Improvement Collaborative.

“We know managing diabetes is challenging for both the patient and the provider,” said Dr. Dara Schuster (pictured right), CEO, T1D Exchange. “The goal of the collaborative is to improve health care delivery for patients living with the disease by eliminating gaps in care.”

Unfortunately, outcomes for people living with diabetes has not yet improved despite advancements in technology. In some communities, individuals with diabetes and their families are still struggling to get basic care and education. The collaborative allows the opportunity for health systems across the country to work together and learn from each other.

“The first step for the collaborative was to develop a standard way to normalize metrics about individuals with diabetes,” said Dr. Clements. “Each center had designed its own way to document diabetes and it was like comparing apples to oranges. Having a standard allows all the diabetes centers to map back to the standard and we can now begin to share metrics about our T1D population.”

Currently, Children’s Mercy is among the first four centers sharing information.

The Importance of Sharing Information

Collecting metrics and creating a standard to measure metrics allows the collaboration to build a best-practice model of how to deliver health care and improve outcomes.

Sharing metrics also enables the centers to create a benchmark, which is used for side-by-side comparison. For instance, centers that are struggling on a particular care process can reach out to centers that are excelling and find out how to achieve similar outcomes.

Members of the collaborative hold monthly webinars and meet in-person twice a year.

“Bringing peers together to learn from one another is key and we’re able to learn faster, together when we all have access to the same information,” said Nicole Rioles (pictured left), director, Quality Care and Clinical Innovation, T1D Exchange.

Dr. Clements added. “We all went to medical school, have the same knowledge and follow the same consensus guidelines. So why are some centers doing better than others? This is where we can learn from one another to try and reduce variation and raise outcomes to a higher level, which benefits all people with T1D.”

The Role of the Patient is Changing

One of the things the network has learned is to include the person with diabetes in the quality improvement process.

“In the past, a group of physicians, maybe some nurses or dieticians or other staff, would get together to figure out how to fix the problem,” said Dr. Clements. “The person with diabetes or his/her parent was never involved in the co-design of interventions.”

The network discovered it gets much further when stakeholders are involved from the beginning.

“After all, the people living with T1D are the target audience, the people we hope will benefit from this change and they should be included,” said Dr. Clements. “This has actually made me rethink how we do science too. Now whenever we’re planning a clinical study or intervention to study in a clinical trial, we involve the individuals with diabetes and their parents from the beginning of the design process.”

What We’ve Learned (Thus Far)

Studies show the rates of depression in adolescents with T1D are double those of their peers without T1D. Yet, only a minority of centers in the collaborative were actually screening teenagers for depression. Without detecting depression, children can’t get the assistance they need.

“It’s impossible to treat depression if it’s not identified,” said Rioles. “Depression screening during diabetes visits became a high priority for the collaborative and we grew from a 10 percent screening rate to more than a 70 percent depression screening rate in a year.”

Because of the increase in screening, Children’s Mercy now has a full-time psychologist in the department.

“It's the first time, since I've been here, we’ve increased our mental health services in the diabetes center,” said Dr. Clements. “Without the collaborative, many diabetes centers wouldn’t have known they should be screening for depression. It goes back to treating the whole person and not just the disease.”

Machine Learning: Improving T1D Using Predictive Models

Participation in the collaborative has opened the door for other related projects. In 2017, Children’s Mercy launched a pilot program to find out if it could predict which youths with T1D were at risk of poor outcomes so doctors could intervene sooner. This was done through machine learning, a set of mathematical tools that detect patterns in large collections of data.

“The standard of care is for people with T1D to be seen in clinic every 90 days. However, based on the predictive models we developed, we can now identify patients that are predicted to have deteriorating blood sugar levels within the next 90 days,” said Dr. Clements. “With this information, we can intervene in a timely matter, before the patient’s next visit.”

Once the intervention has been fully implemented and outcomes are understood, the ultimate goal is for Children’s Mercy to automatically send real-time alerts to providers.

What’s Next

Many would agree there’s still a lot to learn when it comes to tackling all the problems in T1D care, but this is a first step.

“Doing quality improvement work can be challenging as it often requires changing behaviors and processes but working together allows us to learn from each other and improve health care delivery for patients with T1D,” said Dr. Schuster.

Dr. Clements added. “My hope for the next 5-10 years is we can improve the quality of life for people with T1D and their families, improve disease control by getting people the tools that work best for them and tailor care in our clinic so that it’s optimal for each family rather than serving up a one-size fits all model.”

He also noted that participation in the network has reminded him to ground himself in the notion that it’s not about the latest technology or newest medicines, but listening to families.

“Medicine has evolved so much and we have so many interventions that sometimes we forget the obvious, which is to walk in the room and simply ask ‘how can I help you today.”



Learn more about the Division of Pediatric Endocrinology and Diabetes at Children’s Mercy.

Learn more about Children’s Mercy Studies Impact of Machine Learning on TD1 Outcomes.