Management
Guidelines
Portal
PROP Nutrition Management Guidelines
First Edition
March 2017, v.1.2
Updated: September 2017
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Barriers to Implementation
Overview

Overview

Numerous barriers, listed below, interfere with the provision of optimum care for individuals with PROP. While infrastructure, patient-related and regulatory barriers present significant challenges, the implementation of the recommendations in this guideline have minimal impact on resource needs. The recommendations clarify management goals and support clinical decision-making without adding to the number of clinic visits, the number of tests, or the amount of contact time with the metabolic dietitian.

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Infrastructure
  • Lack of trained metabolic geneticists and dietitians
  • Lack of appropriate and accessible clinics, hospitals and laboratories to treat and monitor patients
Patient-related
  • Lack of understanding of the disorder, treatment and monitoring
  • Financial limitations for covering cost of clinic visits, laboratory testing, transportation, and medical foods
  • Language barriers
  • Low literacy
Regulatory
  • Absence of universal mandates for coverage of medical foods, modified low-protein foods, monitoring supplies and metabolic dietitians’ services
  • Federal regulatory guidelines that limit research for treatment and outcomes for rare disorders
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