Typically, a CF patient’s weight begins to decline soon after admission. Let’s face it, hospital food isn’t all that great and not as accessible as at home. 

“A lot of kids who come into the hospital don’t eat and their weight begins to plummet, but CF patients can’t afford to have weight loss,” says nutritionist Meredith Harter, noting that failure to maintain a healthy body mass index (BMI) is associated with lower pulmonary function because the body is not absorbing the nutrients needed to build up strong respiratory muscles. “We want to keep them building instead of taking steps back because they’re in the hospital.” 

So, how do you do that? Through a comprehensive and ongoing nutrition initiative emphasizing an array of approaches, from educating parents and patients about appetite stimulants and oral supplements to meticulously tracking pancreatic enzymes and patients’ growth charts. Patient education for inpatients begins early in the morning with a discussion about oral supplements and the benefits of trying different supplements during their hospital stay, something they’re less able to do at home. Next on the list – food options during their admission. 

“Patients need to know that they can choose two entrees with their meals and that we have these after-hour specials like Baja Fresh, hot pockets and lunchables,” says Harter. “We want to make sure they’re aware of all of their options so they increase their intake.” 

Keeping an eye on pancreatic enzymes is especially important for absorption, digestion and weight gain, so nutritionists spend a good amount of time counseling patients when and how to take the enzymes. For example, slightly higher doses of enzymes may be necessary with high-fat and processed foods. Also, some foods and drinks do not require enzymes because they contain only simple, easily digestible carbohydrates. 

Nutritionists like Harter are also renewing their efforts to educate patients and families about all aspects of tube feeding. Also, with outpatients CF nutritionists are making sure their nutritional needs are being consistently evaluated – at least annually – and that there’s more communication between inpatient and outpatient staff. 

“If I have an inpatient with poor nutritional status, I could remind the outpatient nutritionist to check on him,” says Harter. “We hold weekly meetings to discuss each patient, decide whether social work needs to see the patient about other things in his life that may be interfering with nutrition. We also plot and follow their growth charts to make sure no one is falling through the cracks.” 

Harter concludes, “The mentality of the team is more weight gain and greater BMI correlates with better lung function and better PFTs.”  

For more information, visit the Johns Hopkins Cystic Fibrosis Center.