Knowledge of pancreatic enzyme supplementation in adult cystic fibrosis (CF) patients

Background In up to 90% of patients with cystic fibrosis (CF), pancreatic insufficiency necessitates the use of pancreatic enzyme replacement therapy. But there are concerns about the self‐administration of inappropriate high doses of enzymes. Aims This study was designed to assess knowledge in adult CF patients, to determine when enzymes were taken and whether patients were able to adjust the dose of enzymes with snacks and meals of varying fat content. Methods Sixty‐five adult CF patients, 15–50 years of age, were sent a 10‐item confidential questionnaire and asked to record details of their own supplement use – the type of enzyme preparation, total daily intake, number and timing of enzymes with average meals and snacks and number they would take with specified meals and snacks of varying fat content. Questionnaires were returned by 50 patients. Results Patients are advised to take enzymes just before and during eating. Eighty‐four per cent were taking enzymes before food, but only 46% were taking enzymes at more than one time, either before, during or after eating. The daily enzyme dose ranged from 1000 to 29 117 units lipase kg–1 day–1. Median value 5333 units lipase kg–1 day–1. There was no significant difference between patient reported dose and hospital records for meals and snacks, indicating the accuracy of information obtained for the notes. Patients were given examples of three meals and three snacks with varying fat contents and asked how many enzymes they would take with each. Over one‐third of patients (37%) made no variation; 16% varied the amount for both meals and snacks, 12% varied enzymes for meals but not for snacks and 35% varied enzymes for snacks but not meals. On the basis of each patient’s baseline dose for the lowest fat meal, a comparison was made between dietitian and patient estimate of the appropriate dose for higher fat meals and snacks. In general, the estimates by dietitians were higher. Conclusion Patients were failing to vary the number of enzymes with meals and snacks of varying fat content. It is evident that there is a need for continuing nutrition education in this adult CF population to ensure appropriate doses of enzymes are taken.