The Effect of the Cost and Perceived Cost of Special Low Protein Foods on their Utilization and Dietary Compliance in Phenylketonuria

Abstract

The parents of children with phenylketonuria (PKU) often cite the high cost of special low protein products as a reason for their not using many of these products and for poor dietary compliance in their children. We assessed the actual utilization of special low protein products in 42 PKU children between the ages of 3–8 from three-day diet records that were part of their nutritional assessment at a semi-annual clinic appointment. The cost of these items was prorated per serving from the most up-to-date price lists from the manufacturers. The cost of these items was compared to both the cost of their higher protein counterparts (regular bread, pasta, etc) and to the cost of high protein items (meat, dairy, etc) not allowed on the PKU diet. It was found that the amount of money needed to purchase special low protein foods was significantly less than the amount the USDA estimates it costs to provide high protein items to an average 3-8 year old. This amount was also considerably lower than the amount of money parents estimated that they spend per month for special low protein foods. This suggests that there is either food wastage or the special low protein foods are being consumed by non-PKU family members. A three-month supply of special low protein items was provided to 6 PKU children who had not been completely compliant with the diet and whose families were receiving public assistance. Parents were given recipes, baking pans and menu planning assistance to allow them to make maximum use of the products. Pre-and post-surveys were given to the parents to see how the special products changed the way the children's diets were managed. Further assessment was done using blood phenylalanine levels to see if the provision of the low protein foods made a difference in compliance. The results of this study indicated that the provision of low protein foods to this small group of PKU children, whose families cited cost as a barrier to their utilization did not make a significant difference in dietary compliance.