Parents of young CF children rarely good judges of weight, eating habits

US survey study finds infants, toddlers seen as underweight when they're not

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Two children play with hula hoops while a third jumps rope alongside a basketball and a baseball and bat.

Parents of infants and toddlers with cystic fibrosis (CF) often see their children as weighing less than they actually do, and feel they eat more slowly and enjoy food less than healthy children, according to a small U.S. study.

Using questionnaires like the Baby Eating Behavior Questionnaire (BEBQ), a parent-reported measure of infant appetite, could help doctors in better understanding parents’ perceptions of weight and appetite, and in providing more effective guidance to these adults.

The study, “Parental perceptions of body weight and appetite in infants and toddlers with cystic fibrosis,” was published in the journal Appetite.

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The consequences of having difficulty gaining weight with CF

Malnutrition and poor growth are of concern for children with CF

In CF, the buildup of thick mucus is a cause of repeat infections in the lungs, while in the pancreas it prevents the release of digestive enzymes that help the body break down and absorb food and its nutrients. Malnutrition and poor growth are among disease symptoms, and maintaining a healthy weight is considered crucial for better lung health.

Advances in treatment, particularly the arrival of CFTR modulators, have led to improvements in patients’ lung function as well gains in digestion and height. However, malnutrition and poor growth remain a worry, particularly for parents of young children who may not be eligible for these treatments.

While these parents need to ensure their children are eating enough to maintain weight, they can misjudge a child’s weight gain. Such perceptions can be “particularly inaccurate for infants and toddlers with CF,” the researchers wrote.

An earlier study led by Susan Carnell, PhD, an associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine in Baltimore, used the Child Eating Behavior Questionnaire to show that parents of children with CF, ages 2 to 12, linked eating slowly to weight loss.

Carnell and her team now used the BEBQ and a similar tool, the Child Feeding Questionnaire (CFQ), to look at how parents raising children with CF under age 2 perceive their child’s weight and appetite. These questionnaires cover perceptions of whether a child enjoys food, is eager to eat, eats quickly or slowly, and completes a meal or expresses satiety before then. Responses were compared with those from parents of healthy young children taking part in large research study — called RESONANCE — following children in the U.S. from infancy through childhood.

One of 25 infants and toddlers was correctly seen as underweight by parents

The current study included 32 children with CF (23 boys, nine girls) with mean age 10.9 months. All except one had pancreatic insufficiency, where the pancreas fails to release enough digestive enzymes. Eleven were mainly breast or bottle fed, nine ate only solid foods, and 12 were on a combination of liquid feeding and solid foods.

Eighteen parents completed both the BEBQ and the CFQ. Seven parents completed only the BEBQ, and seven others only the CFQ.

Of 25 children with weight data, one was identified correctly as being underweight based on World Health Organization (WHO) standards. Five of 11 children considered to be of average weight were seen as underweight by their parents. For 13 children with excessive weight, five were considered underweight by their parents and the eight others of normal weight.

“Parents of young children with CF demonstrated high rates of perceived underweight, despite the relatively low occurrence of weights that would be considered low enough to merit clinical concern,” the researchers wrote.

No child was seen as overweight by their parents, although five were above the 85th percentile by WHO measures, meaning that they weighed more than 85% of children their age.

Feeding concerns higher among parents with a child seen as underweight

Parents who perceived a child as underweight were more likely that those considering their child to be at a “right” weight to report a slow eater (3.25 vs. 2.38 in the BEBQ, where a higher score indicates slower eating). They also expressed greater concerns about their child’s weight (2.45 vs. 1.5 in the CFQ, where a higher score indicates higher levels of worry).

Compared with BEBQ responses from parents of 193 healthy infants and toddlers in RESONANCE, those raising children with CF were more likely to consider their children to be slower eaters and less likely to enjoy food.

While the study mostly involved boys and reflected perceptions, not actual measurements or behaviors, its findings suggest that doctors could better advise parents by knowing more about how they see their child’s weight and eating habits.

“It may be helpful for clinicians to educate parents … on normative growth trajectories and to explore parents’ perceptions of child weight and appetite and parent-child feeding interactions so as to promote a fuller understanding of the child’s nutritional status, facilitate appropriate feeding behaviors and alleviate unnecessary concerns,” the researchers concluded.