Malnutrition Associated with Cystic Fibrosis Starts Earlier Than Suspected
Children with cystic fibrosis (CF) are at risk for poor growth, due in part to the unusually high caloric intake recommendations placed upon pediatric CF patients. While several studies have evaluated caloric intake of school-aged children with CF, controlled behavioral assessment studies have not yet focused on infants. A new study by staff psychologist Scott Powers, PhD, and director Lori Stark, PhD, both of the Cincinnati Children's Division of Psychology, fills this gap by assessing caloric intake and eating behaviors in CF infants and toddlers.
The findings suggest that the malnutrition associated with cystic fibrosis starts very early - even in infancy - and that addressing adequate nutrition in CF patients as early in life as possible may improve their health and lung function long term. This news that substandard nutrition from dietary intake starts much earlier than suspected leads researchers to look at behavioral techniques that can aid parents in helping their CF infants get the required nutrition.
Proper nutrition for CF patients is no easy task at any age. Families of children with CF are challenged with unusually stringent dietary recommendations that suggest 120 to 150 percent of the Recommended Daily Allowance (RDA) for energy with at least 40 percent of calories coming from fat. These values are based on imbalanced energy needs resulting from malabsorption of dietary fat and higher metabolic rates in children with CF.
"The goal of nutrition therapy in CF should be to have each child growing optimally, similar to other children their age regardless of their illness," says Dr. Powers. "When you look at the epidemiology, that's just not happening."
Taking a Closer Look at Infants and Toddlers
Dr. Powers and his colleagues performed a two-group comparison study of caloric intake and eating behavior in a group of 35 CF infants and toddlers. The control group consisted of 34 non-CF children who were matched for age, gender, socioeconomic status and number of parents and siblings.
The authors found that the CF group did not differ significantly from the control group with regard to the number of calories consumed per day or the percentage of calories from fat. The CF group did, however, fail to meet the dietary recommendations of 120 to 150 percent of the RDA for calories and 40 percent of calories from fat. Only 11 percent of the CF infants and toddlers met the minimum recommendation of 120 percent of the RDA for energy.
Behavioral scoring of videotaped meals revealed that infants and toddlers with CF had significantly longer meal times than controls, and parents of CF infants and toddlers reported more problematic mealtime behaviors than parents of controls. A positive correlation was noted between the number of mealtime problems and meal length, suggesting that problematic behavior and longer mealtimes are interrelated factors contributing to lower caloric intake.
"It's very interesting that even at this very young age," says Dr. Powers, "children are taking longer at meal times and are getting less out of it in terms of meeting the goals. And it may, in fact, be more challenging for families because they have more behavior to manage over a longer period of time."
Dr. Powers points out that while previous studies have demonstrated low caloric intake in school age children with CF, the results of the present study suggest that clinical intervention should be started much earlier.
"The bottom line is that even at the infant and toddler stage, we need to be intervening in a more preventative approach instead of waiting for problems to occur. The earlier we intervene, the better we might change the course of the illness."
Improved Care for Your Youngest Patients
Dr. Powers says that he and his colleagues are already planning the next series of studies, which will include longitudinal evaluations of eating behaviors and closer examination of behavioral factors such as parent-child interactions during the meal. He stresses that while these studies are assessment-based, the ultimate goal is to improve patient care.
"We want to assess very carefully to determine targets for intervention," he says. "Once we've done that, our goal is to develop interventions and disseminate them so we can change the standard of care. This whole line of research is very much geared toward getting the very best care to the bedside."
This study was published in Pediatrics (109[5]:E75, 2002 May) and was supported by grants from the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Disease and the National Cystic Fibrosis Foundation.
