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Interventions to Improve Calorie Intake in Children with Cystic Fibrosis
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Alexandra Quittner, PhD
University of Miami
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 Increasing calorie intake is an essential part of managing cystic fibrosis (CF), a chronic and currently terminal illness affecting approximately 22,000 Americans. CF is a genetic illness that affects the exchange of salt and water across cell membranes, leading to increased mucus secretions which primarily affect the lungs and pancreas. Daily medical regimens for patients with CF include airway clearance, inhaled medications, oral medications, and increased calorie intake. This treatment regimen is among the most complex and time-consuming, making it especially challenging for families caring for a child with this disease.
Children with CF must eat 125% to 150% of the Recommended Daily Allowance in order to maintain their weight and even more calories in order to promote growth and adequate nutrition. Better nutritional status in CF has also been linked to better lung function and longer survival. Despite its importance for long-term health outcomes, children with CF and their families find it very difficult to meet this daily calorie requirement and adherence to this part of the medical regimen is very poor. Studies measuring adherence to the many aspects of medical treatment for children with CF have consistently shown that rates of adherence to the nutritional requirements are lower than rates of adherence to airway clearance and nebulized medications. Recent data from the Cystic Fibrosis Foundation indicated that 18% of patients with CF were below the 5th percentile and 31% were below the 10th percentile for weight. Thus, improving calorie intake is an important target for intervention.
A series of behavioral observation studies has shown that children with CF spent significantly more time in dinner meals, but are still not able to consume the recommended number of calories. Videotaped studies of dinnertime meals in families caring for a child with CF have indicated that the strategies parents use to increase their child’s calorie intake are not effective. They typically issue many commands to the child to eat, coax, physically prompt, and often agree to prepare a second meal. In response, children delay eating by talking, refuse food, leave the table or become noncompliant with requests to eat. Higher rates of these problematic behaviors were negatively correlated with caloric intake in children with CF.
In response to these data, a behavioral intervention was designed to increase calorie intake in children with CF and teach parents more effective parenting strategies for increasing eating behaviors. Families were randomly assigned to either a nutrition education program (NE) or nutrition + parenting training (behavioral intervention; BI). In both interventions, parents were taught to establish calorie goals for each meal, use calorie boosters (added butter, oil), and cook high calorie meals. In the BI intervention, parents were taught to provide reinforcement for achieving calorie goals, use differential attention to ignore noncompliant behaviors but attend to eating behaviors, and to use contingencies to increase behaviors that were compatible with greater calorie intake.
In a small study of 7 families, these two interventions were compared. Significant improvements were found in BI vs. NE groups in calorie intake (1,036 calorie increase vs. 408 calorie increase) and weight gain (1.42 kg vs. 0.78 kg). A Daily Phone Diary procedure also indicated that families in the BI group ate more meals with their children at the 12-month follow-up than the NE group, and maternal mood during meals improved in both groups and maternal stress decreased over the intervention and follow-up assessments for both groups. A measure of coping efficacy suggested that the BI group reported less frequent and difficult problems related to nutrition and increased the competence of their coping strategies by 12 months post-intervention. Decreases in difficulty and increases in coping efficacy were not found in the NE group.
With funding from NIH, we have now extended this intervention study to several CF Centers in the US. This larger, randomized controlled trial will give us an opportunity to test these interventions with a larger group of families. Preliminary analyses of these data suggest that the behavioral intervention with the parent training component is more effective than nutrition education alone. The implementation of this type of intervention, which is time and resource-intensive, poses other challenges for psychologists and health care professionals working in medical centers. If the behavioral intervention is successful, additional research will be needed to develop an “effectiveness” trial to assess the practicality of using this intervention in medical settings.
References
Quittner, A.L., Tolbert, V.E., Regoli, M.J., Orenstein, D., Hollingsworth, J.L., & Eigen, H. (1996). Development of the Role-Play Inventory of Situations and Coping Strategies (RISCS) for parents of children with cystic fibrosis. Journal of Pediatric Psychology, 21, 209-235.
Quittner, A.L., Espelage, D.L., Ievers-Landis, C. & Drotar, D. (2000). Measuring adherence to medical treatments in childhood chronic illness: Considering multiple methods and sources of information. Journal of Clinical Psychology in Medical Settings, 7, 41-54.
Stark, L.J., Jelalian, E., Mulvihill, M.M., Powers, S.W., Bowen, A.M., Spieth, L.E., Keating, K., Evans, S., Creveling, S., Harwood, I., Passero, M.A., & Hovell, M.F. (1995). Eating in preschool children with cystic fibrosis and healthy peers: A behavioral analysis. Pediatrics, 95, 210-215.
Stark, L.J., Jelalian, E., Powers, S.W., Mulvihill, M.M., Opipari, L.C., Bowen, A., Harwood, I., Passero, M.A., Lapey, A., Light, M., & Hovell, M.F. (2000). Parent and child mealtime behaviors in families of children with cystic fibrosis. Journal of Pediatrics, 136, 195-200.
Stark, L.J, Opipari, L.C., Spieth, L.E., Jelalian, E., Quittner, A.L., Higgins, L., Mackner, L., Byars, K., Lapey, A., Stallings, V.A., & Duggan, C. (2003). Behavior Therapy, 34, 237-258.
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