Management
Guidelines
Portal
MSUD Nutrition Management Guidelines
First Edition
February 2013, v.1.46
Current version: v.2.0
Updated: May 2014
Feedback/Comments :: View Release Notes
Send us your Feedback & Comments
This version is not current. Click to view the most recent edition (v.2.0, May 2014).
Barriers to Implementation
Overview

Numerous barriers, listed below, interfere with the provision of optimum care for individuals with MSUD. 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.

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
© 2006-2015   —   SOUTHEAST REGIONAL GENETICS NETWORK   —   A HRSA SUPPORTED PARTNERSHIP   —   GRANT #UH7MC30772