A survey of nutrition practices for patients with cystic fibrosis.

BACKGROUND: Cystic fibrosis (CF) affects approximately 30,000 people in the United States and is characterized by pulmonary disease and poor nutrition. Optimal nutrition is associated with better pulmonary function, and aggressive nutrition interventions have played a major role in increased survival. Even though the CF Foundation (CFF) has published treatment guidelines for certain areas of nutrition care, there may still be variability in other areas. Thus, the purpose of this study was to survey current practices among CF dietitians.

MATERIALS AND METHODS: A 25-item web-based survey was developed and sent to nutrition professionals via the CFF nutrition listserv. Responses were anonymous. Areas of practice surveyed included nutrition care for infants, pancreatic enzyme replacement, vitamins and bone health, and miscellaneous practices. Descriptive statistics were used to report the results.

RESULTS: Among the 76 respondents (21% response rate), there was general agreement regarding nutrition practices for infants and pancreatic enzyme replacement. Responses varied regarding enzyme administration with gastrostomy tube feeds and in practices related to bone health. Of miscellaneous practices, there was agreement regarding zinc supplementation and appetite stimulants. However, opinions varied regarding concern for coronary artery disease with the CF high-fat diet. Practices related to use of acid blockers also varied.

CONCLUSION: The results of this survey demonstrate good agreement among nutrition professionals in some areas and variability in others for the nutrition management of patients with CF. Areas of variability point to the need for further research and continued additions to the guidelines and consensus statements.