Graduate Program

Nutrition and Dietetics

Degree Name

Master of Science (MS)

Semester of Degree Completion

2017

Thesis Director

Melanie Tracy Burns

Abstract

This study was designed to identify the financial burdens associated with purchasing medical foods and the impact this has on the dietary management of adults with PKU. PKU is a genetic disorder in which the body cannot metabolize the amino acid, phenylalanine, which occurs in all foods with protein. Dietary treatment of foods low in protein along with medical supplementation is required for the treatment of PKU. If PKU is left untreated this can lead to severe neurological damage. Medical guidelines indicate that dietary treatment is needed for the duration of one's life, but the medical foods needed are expensive and individuals receive minimal to no insurance coverage. An online questionnaire survey was designed to identify different financial barriers associated with the cost, PKU treatment modalities and how identified barriers affect the management of the medical nutrition therapy in adults with PKU. Sixteen participants were included in this study and descriptive statistics were used to analyze the collected data. The results showed that participants paid out-of-pocket for alternative medical protein products and modified low-protein foods the most, ranging from $100-$500. The results also showed that participants perceived the cost of medical foods to be expensive, and felt that insurance coverage was inadequate. Further research is needed to continue investigating adult patient barriers to medical foods across the country.

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