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For children with diabetes, there are no vacations. Their families can take them to a beach or to a park, certainly, but they can’t take them away from the daily monitoring required for survival. For the rest of their lives, they’ll have to pay special attention to their disease or risk blindness, amputation, heart attack, or kidney failure.
On the other hand, there’s a bright side for kids with diabetes: They have a much better chance than their adult counterparts of avoiding such complications. In fact, under careful management, they may never have to spend another night in the hospital because of diabetes.
At the Diabetes Care Center at Texas Children’s Hospital in Houston, a unique and aggressive patient management program takes into account the special circumstances of pediatric diabetes and teaches children and their families to become their own case managers. One of the largest programs for children and a pioneer in the field, the Diabetes Care Center cares for more than 1,000 patients and their families on both an inpatient and outpatient basis. Hallmarks of the multidisciplinary program include intensive one-on-one education geared to the patient’s age, frequent telephone contact with patients and families, and emotional and social support. In December, the center will start a care management program to help high-risk patients avoid medical crises.
"We can look at diabetes from the child’s perspective and try to explain it to them better than an adult program could," says Barbara Schreiner, RN, MN, CDE, associate director of the Diabetes Care Center. "We have enough time for kids to stay healthy with their diabetes, where sometimes my adult colleagues are already seeing patients with complications. There’s not a whole lot of hope that you can engender when the patient in your office has already had an amputation. We have a fresh slate."
A team of physicians, nurse educators, utritionists, dietitians, social workers, psychologists, and psychiatrists works with patients. Immediately after diagnosis, the patient and family members go through about 12 hours of individual education on "survival skills" over a period of three days. They learn such skills as blood sugar testing, how to give injections, and when to call for help.
"Anybody in their right mind recognizes that immediately after a diagnosis of diabetes is the absolute worst time to hit a family with 12 hours of education, but juvenile diabetes is a sudden onset, devastating, life-threatening diagnosis," says Kenneth Copeland, MD, director of the Diabetes Care Center and professor of pediatrics at Houston-based Baylor College of Medicine. "That’s why we call those first 12 hours survival skills. In order for the parents to take this child home, they have to know these skills. It’s the worst time, but it’s the only time to learn. Then they get the rest later when they’re more receptive."
Patients come back one to two weeks later for an individual visit with a nurse manager who checks their status, clarifies misconceptions, and answers questions. In about a month, the patient sees the physician. In the meantime, nurse managers contact the patients and families by phone, daily at first and then less frequently as they learn to manage the disease. In another month, patients and families attend a group class that teaches them such skills as managing days when their sugars are out of control and adjusting insulin doses. The class also provides social and emotional support for families.
The center’s new care management program will add to the mix a special focus on approximately 100 high-risk patients, including those who come from a dysfunctional family, are having a hard time accepting diabetes or its management strategy, have financial problems that affect their care, or have had frequent return visits to the hospital. These patients will be contacted more frequently while they’re healthy to head off problems.
The education portion of the program is geared toward the patient’s age, Schreiner says. When the patient is an infant, the material is taught at an adult level to the parents. As the child grows up, he or she is gradually taught the information the parents have already learned. Small children learn to give injections to dolls. For a 10-year-old, the educator might get down on the floor with the child and use coloring books to teach while the parents listen. Educators also use games, videos, felt boards, drawings basically any techniques used in schools. Hands-on activities such as cooking classes and grocery store label-reading trips are especially helpful. Parents are linked to support groups and get help with such issues as finding babysitters who understand diabetes.
The center also offers seminars on various topics. College-bound patients discuss how to handle their disease away from home, where to get supplies, and how to handle all-nighters. Grandparents learn the basics of diabetes management so they’ll feel comfortable having their grandchildren visit. Teen-age girls worried about their weight learn how to choose and prepare healthy foods.
The intensity of the program is necessary to help children deal with diabetes, Copeland says. "There is no other disease in pediatrics that is comparable, whether it be cancer or kidney failure or severe chronic asthma," he says. "All of those diseases have periods of remission or improvement, times when it sort of goes away. There’s not a single day in the life of a diabetic child in which he does not have to think about his diabetes, what he’s going to eat, when does he test himself, when does he get a shot."
Besides the emotional support, a pediatric diabetes program can improve quality of life and provide a huge cost benefit down the road, Copeland says. "I can guarantee patients that if they don’t take care of themselves, they will have complications by the time they’re in their 30s or 40s. Diabetes is one of the few diseases where we have data to show that complications are prevented or reduced by good care."
[For more information about pediatric diabetes programs, contact: Kenneth Copeland, MD, director, or Barbara Schreiner, RN, MN, CDE, associate director, Diabetes Care Center, Texas Children’s Hospital, 6621 Fannin MC3-2351, Houston, TX 77030. Telephone: (713) 770-3605.]