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Community child health, public health, and epidemiology
Plasma phenylalanine in patients with phenylketonuria self-managing their diet
  1. J Bekhof1,
  2. M van Rijn2,
  3. P J J Sauer2,
  4. E M Ten Vergert2,
  5. D-J Reijngoud2,
  6. F J van Spronsen2
  1. 1Isala klinieken, Locatie Sophia
  2. 2Groningen University, Netherlands
  1. Correspondence to:
    Dr F J van Spronsen
    Groningen University, Beatrix Children’s University Hospital, PO Box 30.001, Groningen 9700 RB, Netherlands; f.j.van.spronsenbkk.azg.nl

https://doi.org/10.1136/adc.2003.040451

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    Dietary adherence in phenylketonuria (PKU)—measured by plasma phenylalanine (Phe) concentrations—is a major issue.1,2 In the so-called professionally steered situation, it was our practice to take all blood samples for measurement of Phe during patients’ hospital visits. Phe concentrations were interpreted by the paediatrician, and the dietician phoned patients/parents with dietary advice. Self-management has been suggested to improve dietary adherence.1 We report Phe concentrations during our first six months experiences with self-management in 48 PKU patients above 1 year of age.

    During this period, patients decided frequency of blood sampling and sent samples (filter paper) to the laboratory by post. A nurse without knowledge of PKU phoned the results to patients/parents without interpretation/advice. Patients/parents decided independently regarding …

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    Footnotes

    • Competing interests: none declared