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Introduction: Glucose Transporter Deficiency Syndrome (GLUT1) is a rare genetic metabolic disorder characterized by deficiency of a protein that is required for glucose to cross the blood-brain barrier. The current gold standard treatment for GLUT1 is the ketogenic diet (KD). The KD is carefully tailored to individual patients and involves purchasing specific foods unique to the family member on the KD. The foods and supplements required on the KD are currently an out of pocket expense for the majority of families (minimal insurance coverage). A review of literature indicated the average cost of the specialty foods and supplements to families is unknown. The purpose of this study was to determine the estimated monthly cost of KD ingredients of foods and supplement consumed by orally fed patients with GLUT1.

Methods: This study involved a retrospective chart review of patients seen in the Epilepsy Center at Children’s Mercy Hospital (CMH) with the diagnoses of GLUT1 between 4-24 years of age who wereorally fed on the classic KD. These patients are on the medically prescribed classic ketogenic diet which provides the recommended energy for their diagnosis. Patient’s current meals, snacks and supplements were analyzed for the cost of the ingredients the families purchase. Cost of the ingredients was determined through visits to local grocery stores,averaged and then used for the calculations. The use of a ketogenic diet calculation program was used to determine the total grams of ingredients the patients consumed through pre-calculated meals, snacks and supplement for each patient. Calculation parameters include age, gender, diet ratio and calories were compared to the USDA food plans: Cost of Food at Home at the liberal plan for a family of four.

Results: Nine patients with GLUT1 were identified on the KD at CMH. Average monthly cost of foods purchased was $143-185 per patient on the KD compared to USDA estimated average monthly cost food plan for a family of four $42-82. Average cost was not associated with age, gender, calories nor ratio. Cost of ingredients reflected on the types of foods the patient consumed. Micronutrient supplement costs ranged between $0.22-2.22 per day per patient.

Conclusion: The average cost of ingredients for GLUT1 patients on the KD is 1.75-3.5 times greater than the USDA average for age/gender for a liberal food plan. TheKDfoods and supplements are currently an out of pocket expense for mostfamilies. Future research will include multiple sites representing additional regions of the United States. The data collected can provide information for potential future legislation or program development intended to support families’ expenses related to the dietary treatment of their disease.

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Food Cost of Classic Ketogenic Diet in Patients With Glut1