Keywords

adherence, adult PKU, compliance, diet, educational tool, phenylketonuria, PKU

 

Authors

  1. Freehauf, Cynthia L. MS, RN, CGC
  2. Bernstein, Laurie MS, RD, FADA
  3. Amos, Kiersten LLB
  4. Isacks, Katherine MPS, RD
  5. Gao, Dexiang PhD
  6. Thomas, Janet A. MD

Abstract

A 2-day conference, titled "Network PKU," was developed for adolescents and adults with phenylketonuria and their family members. It was designed to facilitate diet adherence in the current patient population. A novel venue-a local culinary academy-and a variety of learning formats were employed. Results of surveys, conducted at the end of the conference and at 4 months postconference, indicate that it was perceived by attendees to be a valuable and effective tool for facilitating diet maintenance in the assessed time period. Potential factors leading to the success of the conference format are also discussed.