Personalizing Diabetes Care

clark detail 2

Pediatric nurse educator Loretta Clark teaches patients how to use the latest technology to manage their diabetes.

People with type 1 diabetes have to learn how to deal with their disease. Those that manage their blood sugar well know the intricate dance of how to deal with a variety of situations: a serving of a coworker’s birthday cake, playing sports, dealing with a bout of stomach flu. But for families whose child has just been diagnosed with this lifelong—and life-changing—illness, both the present and the future can be daunting.

“There’s so much to learn—how to monitor blood sugar, how to give injections, how to deal with acute issues that could arise,” says Johns Hopkins pediatric diabetes nurse educator Loretta Clark.

“With this level of intensity for diabetes management, parents need a lot of help and support from the initial diagnosis,” adds fellow pediatric diabetes nurse educator Kimber Abel.

That’s a critical reason why, nearly 30 years ago, Clark and Johns Hopkins pediatric endocrinologist Leslie Plotnick founded the Pediatric Diabetes Clinic at the Johns Hopkins Children’s Center. Now staffed by 7 pediatric endocrinologists and fellows, the clinic offers full multidisciplinary care to families whose child has been diagnosed with diabetes. Clinicians see both type 1 and 2 patients here, but the vast majority of patients are those with type 1.

When patients are initially diagnosed, Plotnick explains, in addition to receiving medical care, families spend three days engaged in an intensive education program covering all aspects of diabetes care, ranging from the day-to-day knowledge they’ll need for correct insulin dosing to the complicated emotions surrounding this disease. Later, after they leave the hospital and they begin the tough work of managing their child’s care more independently, their routine visits include meetings with a care team that includes diabetes educators, nutritionists, psychologists, and social workers in addition to their endocrinologists.

While many pediatric diabetes clinics around the country have a similar multidisciplinary approach, the difference at Johns Hopkins, says Plotnick, is the personal care that patients receive.

“The patients know us, and we know them,” she says. “Each patient usually has one physician, one certified diabetes educator, and one psychologist. They get a lot of direction and support from the same group of people every time they come in or contact us with questions.”

A pivotal part of this team, Plotnick notes, is the pediatric diabetes nurse educator. In 2007, the center received a gift that revolutionized this role, providing an endowment that allowed for a full-time position. Clark is the inaugural recipient of the Pediatric Diabetes Nurse Educator Endowment at Johns Hopkins.

“This endowment has allowed us to give the kind of care that we think is best for a growing number of patients,” Plotnick says. While the number of total patients seen at the center continually changes, she adds, it averages around 400 to 500—a small number compared to other medical centers, which allows for an individualized focus.

Having full-time pediatric diabetes nurse educators is crucial for the personalized care the center provides, explain Clark and Abel. In addition to seeing families in person and coordinating their care with the entire diabetes team, they also answer emails, faxes, and phone calls from parents with requests for advice on blood sugar and urgent questions about the particulars of each patient’s unique circumstances.

“They’re calling us, sometimes every day, to go over issues and concerns,” Clark says. “The ability for someone to be there to help them relieves a lot of stress about diabetes management.”

Clark and Abel also work as liaisons with schools to make sure that nurses there understand how to manage their young patients’ care.

In the end, says Plotnick, the team’s objective is not just to make sure patients manage their disease well, but that they also have a life beyond their disease.

“We want them to manage diabetes,” Plotnick says, “but we don’t want their only life focus to be on managing diabetes. We want our patients to have the same kinds of goals and dreams that everyone else has.”