The Challenge:  Young patients usually require something a bit different from our health care system, and that’s especially true if they are living with a chronic disease.  For instance, children with diabetes often have a tough time complying with traditional insulin therapy, because it’s based upon a highly regimented treatment schedule and diet. This can be difficult for kids of all ages, from preschoolers with unpredictable or fussy appetites to teenagers who would rather sleep than eat breakfast.

When a new, more flexible insulin therapy became more widely available over the past few years, many of the established diabetes patients and their families at Cincinnati Children’s Hospital Medical Center decided to make the switch. Staff were able to facilitate this process with relative ease because the patients and families were already experienced with the delicate art and science of insulin use.

But what about newly diagnosed patients? The Pursuing Perfection team at Cincinnati Children’s charged with improving diabetes care knew that being truly patient-centered meant letting patients and families make choices whenever possible. But they worried that the complexities of the new therapy might be too challenging for new patients just getting used to the task of balancing insulin and diet. And they had a more practical worry as well: Since new patients require considerable education, training, and support, would offering two different insulin regimens to new patients­ — and two different educational and training programs — stretch their resources too thin? Wouldn’t it be easier for patients, and for staff, if all new patients started on the traditional therapy and were allowed to switch only after having mastered it?

The Background:  Located in Cincinnati, Ohio, Cincinnati Children’s Hospital Medical Center has 16 patient care sites throughout the region, including a 423-bed acute care hospital. As one of the nation’s best pediatric hospitals, Cincinnati Children’s consistently ranks among the top ten in the yearly review by U.S. News & World Report. The hospital offers the only Level 1 pediatric trauma center in southwestern Ohio, northern Kentucky, and southeastern Indiana, as well as the only pediatric cardiac intensive care unit in the region. The flagship hospital is also widely known for excellence in heart, kidney, and liver transplantation, as well as blood and marrow transplants. 

Cincinnati Children’s is also unique among Pursuing Perfection sites in two regards: It is the only one anchored by a pediatric hospital and the only one entirely structured as an academic medical center. (The medical and research staff comprise the Department of Pediatrics at the University of Cincinnati College of Medicine.) Both of these distinctions drive Cincinnati Children’s approach to improvement work: Family members must be viewed as central to caring for pediatric patients, and the more complex organizational structure sometimes makes it especially challenging to introduce change.

The Situation:  Diabetes is a condition in which the body does not make or properly use insulin, a hormone the body needs to convert sugar, starches, and other food into energy. People with diabetes have increased blood glucose (sugar) levels due to a lack of insulin, insufficient insulin, or resistance to insulin's effects. High levels of glucose build up in the blood and spill into the urine as waste.  As a result, the body loses its main source of fuel.

Type I diabetes, in which the immune system attacks the body’s insulin-producing cells, occurs most frequently in children and young adults. Type II diabetes, characterized by the body’s growing resistance to insulin, is often associated with obesity and sedentary lifestyles in older adults, although according to the National Institutes for Health, the incidence of Type II diabetes in children is on the rise. About 100 of the approximately 1,440 children in the Cincinnati Children’s diabetes program have Type II diabetes.

The goal of insulin therapy is to keep blood glucose levels as close to a normal range as possible, mimicking the body’s normal functions. Traditional insulin therapy, known as NPH (for neutral protamine Hagedorn), requires patients to take two injections of NPH insulin mixed with regular insulin daily, in the morning and in the evening. NPH is a long-acting, slow-releasing insulin. “For NPH to work well, you have to have an incredibly regimented life,” says David Repaske, PhD, MD, Medical Director of Cincinnati Children’s Diabetes Center. “You have to wake up at the same time each day, eat the same carbohydrate content at the same times each day, whether or not you’re hungry. You have to go to bed with a full stomach because the NPH peaks in the middle of the night. For some families this works, but for many kids, it’s really tough.”

The newer, more flexible therapy is known as “basal bolus.” “You take your basal shot once a day, which gives you a constant basal level of insulin, and a bolus shot of a more rapid-acting insulin before each significant meal or snack,” explains Repaske. “You determine the amount of the bolus dose depending on what you intend to eat, so the insulin is matched to the food, not vice versa. For some people, that’s an additional three or five or six shots. But the extra shots are worth it for the freedom they buy.”

Helping experienced patients transition to the new therapy was one thing, but the program leaders were unsure about the ramifications of offering a choice of therapies to newly diagnosed patients. “We called around the country to see what other academic medical pediatric centers were doing, and we couldn’t find anyone who was giving a choice to new patients,” he recalls. “So we decided we would try it.”

The Solution:  The diabetes team worked to redesign educational materials and training programs for patients and their families, outlining the pros and cons of each regimen.  They also engaged in some retraining themselves. “We had to educate interns, nurse practitioners, and diabetes educators about how to support new patients using the basal bolus therapy,” says Repaske.  “It took a lot of work.”

It also took some attitude adjustments. Because basal bolus therapy is complicated, requiring patients to determine the carbohydrates in the meal they plan to eat and calculate the bolus dose accordingly, providers typically haven’t believed that patients and families could manage it. “Historically, we would only let NPH patients convert to basal bolus after they had achieved excellent control with NPH, which is almost impossible to do,” says Repaske. “We set an unrealistically high bar for them to hurdle before we let them switch to something that would make their lives easier, because we thought if they couldn’t do well with the traditional therapy, they wouldn’t do well with the more complicated one.”

But the leaders also knew that empowering patients to make informed choices about their own treatment is in everyone’s best interest. “There truly is no ‘right’ choice,” says Marcia Wonderly, BSN, RN, a diabetes educator with the program. “We want our patients to know that whatever insulin therapy they choose is right for them.” So in April 2003, the diabetes program began offering newly diagnosed patients the choice of NPH or basal bolus therapy. 

Robin Kelly is the mother of 13-year-old Samuel, diagnosed with Type I diabetes at age eight. Samuel switched from NPH to basal bolus therapy after about a year, and his mother says having that choice at the time of diagnosis would have been even better. “Having a choice is a huge thing,” she says. “As parents, we are programmed to take care of our children. When your child is diagnosed, you feel out of control. Being able to choose their treatment helps you feel a little more in control.”

Kelly says that the basal bolus therapy has helped the family relax a little, and has given Samuel much greater flexibility. And as he has gotten older and more responsible, Samuel has learned to manage his care quite well, says his mother. He uses an insulin pump, a pager-sized device that connects to a tiny catheter, allowing him to “dial in” his insulin doses on the pump. The catheter must be moved to a new site every few days, but the overall reduction in needle sticks makes the pump the best choice for him.

Nurse Educator Marcia Wonderly, herself the mother of a daughter with diabetes, says that choice is important not just at diagnosis, but throughout a patient’s life. “Kids change,” she says. “What works well at one age doesn’t work so well at another. We want parents to know that if their child changes his or her mind about their therapy, that’s okay. That is part of growing and developing.”

Repaske says that Samuel and other patients like him can take credit for the program’s shift toward offering treatment choices to all new patients. “We thought it would be too complicated for some patients, but it wasn’t. It was just us: We were scared of it. The patients rose to the challenge and proved that everyone can handle basal bolus. So we dropped the barriers.”

The Results:  “Initially, about half of new patients chose the basal bolus therapy,” says Dr. Repaske. “Within about four months that number rose to about 85 percent.” But, he adds, “We have a strong philosophy of choice and believe that there will always be 10 to 15 percent who prefer NPH. And it’s turned out not to be a problem for us to maintain both, once we laid the groundwork.”

The impact on clinical results is a little tricky to determine, because the program’s data are not segmented by therapy. Overall, says Repaske, the average HbA1c for children in the program has decreased in the past two years, with the percent of patients meeting the Center’s goals for HbA1c levels rising from 22 percent to about 35 percent.  (The goals, segmented by age, are as follows: an HbA1c rate of 8 or less for children under six; 7.5 or less for children age six to 12; and 7 or less for teenagers.) Repaske points out that the younger the patient, the more challenging it is to get and keep the A1c level near the goal. “Particularly with babies, whose systems are more sensitive, you don’t want to manage their therapy so tightly that you risk sending their glucose level too low,” he says.

The Center is taking many steps to continue improving its patients’ glucose levels, including use of new written guidelines and algorithms that help both parents and providers take consistent steps when children are sick, and more intensive follow-up care for children who have been hospitalized, including weekly phone calls and monthly visits. Repaske says that all patients with an HbA1c level over 10.5 receive proactive, intensive outreach and support from the diabetes team.  

“We are not happy when any patient is not at goal. Our goals are more stringent than the ones recommended by the American Diabetes Association,” says Repaske. “They really reflect our commitment to pursuing perfection.”

What Team Members Say:  “It’s more fun to take care of diabetes patients who are engaged in their treatment in a positive way. Now we can offer strategies for fine-tuning their insulin dose, or calculating the carbs on a buffet table, instead of insisting that they be more regimented, living life in a way I don’t think I could myself.” — David Repaske, PhD, MD, Medical Director, Cincinnati Children’s Hospital Diabetes Center

“At diagnosis, we meet with the patient and family for a lifestyle assessment. We talk about their family’s schedule, activities, meals, school, what the child’s habits and preferences are. Then it’s truly up to the families to choose what regimen works for them. We’ll support them either way. We want diabetes to fit into their lives, not the other way around.” — Marcia Wonderly, BSN, RN, Diabetes Nurse Educator

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