UF researchers to help families of children with cystic fibrosis and diabetes adhere to medical regimens

A University of Florida research team, supported by a $2.6 million National Institutes of Health grant, seeks to define the barriers that keep parents and children from adhering to complicated medical regimens, and to help parents manage the care of children with chronic illness.

The four-year study will be aimed at providing parents with strategies for helping their children follow their prescribed medication schedules, stick with special diets and get adequate exercise.

Investigators Suzanne Bennett Johnson, Ph.D., and Alexandra Quittner, Ph.D., both professors of clinical and health psychology in UF’s College of Health Professions, will work with 200 families of children under age 11 with cystic fibrosis or diabetes during the course of the study.

“Both of these chronic diseases of childhood are extremely difficult to manage and require several types of daily medical treatment,” Quittner explained.

According to Johnson and Quittner, compliance with these medical regimens is, on average, below 50 percent for both diseases and the consequences for not properly following health provider recommendations can be serious. A decline in the child’s health and development, absences from school, increased family stress and higher health-care costs for the child’s treatment are all results of noncompliance.

The UF researchers will document the reasons parents are unable to follow the regimens prescribed for their children. These may include insufficient skills to carry out the treatment; failure to remember to administer treatment; lack of time management; inability to gain cooperation from the child; and miscommunication between the parent and health-care provider.

Type 1 diabetes adversely affects the way the body uses glucose obtained from the daily diet. Diabetes can cause an excess accumulation of glucose in the blood, which can damage almost every major organ in the body. Children with type 1 diabetes must take daily multiple injections of insulin timed to coincide with meals. The disease requires testing of blood glucose levels two to four times per day using a finger stick to draw blood. The child also is asked to follow a particular diet and exercise guidelines.

Cystic fibrosis is a genetic condition affecting the glands that produce mucus, sweat, saliva and digestive juices. The most dangerous consequences of cystic fibrosis are lung disease and respiratory failure. Children with cystic fibrosis must take oral or inhaled antibiotics and mucus-thinning drugs two to three times a day along with 20 to 30 minutes of airway clearance twice a day to break up mucus in the lungs. Children with cystic fibrosis also should receive enzyme medications with each meal and snack and consume 50 to 100 percent more calories than a healthy child.

With the expert help of psychologists and specially trained nurses and behavioral interventionists, the study seeks to give parents the tools they need to manage the child’s disease successfully. By combining educational approaches with behavioral change strategies, researchers hope to improve children and parents’ compliance with complex medical regimens.

As the initial step in their 15-month involvement in the study, parents will receive a form from their child’s physician providing clear, written instructions on their child’s treatment plan. Parents also will meet with study personnel during their children’s regular visits to UF pediatric clinics and receive follow-up phone calls. Researchers will chart their progress and make sure parents have the support and information they need to adhere to their child’s medical regimen.

To measure the effects of the study’s efforts, electronic monitors will be used to document when the child’s treatments are given. Monitors on pill bottles, blood glucose testers and inhalers will tell investigators the date, time and frequency of use. Chart reviews will be conducted to compare the children’s hospitalizations, emergency room visits and extra clinic appointments before and after the study’s intervention.

Johnson and Quittner hope that by conducting the intervention in families with younger children, they may prevent or minimize the health problems often seen in adolescents with diabetes or cystic fibrosis. Establishing these behavior patterns will help these children effectively manage their own diseases as they enter adulthood.

Other aims of the study include improving parents’ satisfaction with clinic visits, estimating the cost effectiveness of the intervention and improving the children’s quality of life.