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Dietitian's Corner - PKU Dietary Management & At Home Monitoring
Sharon L. Ernst, MPH, RD, CD
Chief Metabolic Dietitian, University of Utah Metabolic Clinic
Dietary treatment for certain inborn errors of metabolism like PKU require a restricted diet to maintain blood levels within a therapeutic range. Successful management of PKU is multifaceted and requires that patients and caregivers are familiar with the prescribed diet, can track phenylalanine intake, obtain periodic blood levels, monitor growth and have adequate financial resources. Several years ago a group of researchers in Utah surveyed patients and families following a low phenylalanine diet for PKU. The survey was designed to assess management practices, identify barriers to effective dietary management, and review the usefulness of a home monitoring device to test blood phenylalanine levels.
All of the respondents recognized the long-term negative consequences of not following a phenylalanine-restricted diet, but the depth of their understanding was not clear. The primary barriers to following the diet were time constraints, stress related to preparing food, keeping diet records and the restrictions imposed on social life by PKU. Dissatisfaction with the diet and lack of variety was common among individuals and caregivers.
Testing the blood phenylalanine was reported to be time consuming and cumbersome. In addition, waiting for the laboratory results make it difficult to follow the prescribed diet. The majority of the respondents stated that the diet would be followed more carefully if the blood Phe levels could be tested regularly at home. Obtaining more frequent blood levels have been correlated with better dietary management in the Utah Metabolic clinic. Families reported that an at home blood monitoring device would allow immediate feedback so that blood phenylalanine levels could be maintained consistently with quick dietary adjustments.
In many chronic conditions like diabetes, better self management requires that patients, families and providers work together. As new technology and tools emerge to help manage PKU, individuals can take more active roles managing their diets for life.
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