Management
Guidelines
Portal
VLCAD Nutrition Management Guidelines
First Edition
February 2019, v.1.0
Current version: v.1.1
Updated: February 2019
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Barriers to Implementation
Overview

Numerous barriers, listed below, interfere with the provision of optimum care for individuals with VLCAD. While infrastructure, patient-related barriers 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.

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, medical food, and prescriptions
  • Language barriers
  • Low literacy and/or numeracy
Regulatory
  • Absence of universal mandates for coverage of medical food, prescriptions, monitoring supplies, and metabolic dietitians' services
  • Federal regulatory guidelines that limit research for treatment and outcomes for rare disorders
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