Combined cross-sectional prospective study to identify barriers to adherence of pancreatic enzyme use in patients with cystic fibrosis

Abstract

Monitoring and adjusting dose requirements of pancreatic enzyme replacement therapy (PERT) are an integral part of the dietetic assessment of patients with CF. We wished to characterize enzyme usage in our adult population and determine the extent to which inappropriate enzyme usage contributed to poor nutritional and clinical state.
Information was collected using a self-administered questionnaire developed to measure patient practice, knowledge and beliefs relating to PERT. Exclusion criteria included pancreatic sufficiency, <1500 U lipase/kg/d, and FEV1 <30%.
49 patients completed the questionnaire (16-54y, 55% male, FEV1 31-125%). 67% of participants reported to never miss enzymes with meals; this was considerably lower for snacks (35%). Those patients who omit enzymes with meals also missed enzymes with snacks (r =30%, p<0.001). A more appropriate use of PERT was observed in patients with lower as opposed to higher BMI. Despite intensive dietetic input 29% of patients missed PERT with foods that contained fat and 20% of patients took PERT inappropriately with food that did not contain fat. The results identified 5 potentially better practices for measuring PERT behaviour and knowledge. In conjunction with their BMI and degree of gastrointestinal symptoms risk for intervention can be assessed.
The results showed underweight patients to have more optimal enzyme use, suggesting greater dietetic involvement in these patients. Schall et al (2006) also found this to be the case in children. The findings emphasised the need for targeted and effective input in patients where problems are less obvious. The questionnaire has been a useful research tool, and has been adapted as a screening tool for dietitians to gain a subjective perspective of patient’s enzyme management and identify patients who need support. The combination of patient’s PERT usage and their nutritional status could help capture and identify risk objectively and quickly and allows resources to be allocated most effectively.

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