IDEAS home Printed from https://ideas.repec.org/p/uta/papers/2004_04.html
   My bibliography  Save this paper

Living with Phenylketonuria: Perspectives of Patients and Their Families

Author

Listed:
  • Cihan Bilginsoy
  • Norman Waitzman
  • Claire O. Leonard
  • Sharon L. Ernst

Abstract

This study surveyed PKU patients and their primary caretakers to assess their current management practices, the barriers to effective management, and the potential utility of a home monitor in managing PKU. A survey instrument was mailed to caretakers of all 50 patients with PKU in Utah between the ages of 2 and 18 in 1997 (response rate: 64%). It included separate components for caretakers and patients aged 10 to 18. While there was uneven compliance with recommended practices, caretakers universally recognized the negative consequences of not adhering to the low-protein diet. There was, however, disagreement regarding such consequences among the older children surveyed. The primary obstacles cited to better adherence were time constraints and stress associated with food preparation and record-keeping, and the restrictions imposed on social life. Phe test results were regarded as the principal signal for the need for dietary adjustment. A home monitor, it was widely agreed, would facilitate better management through more regular and timely feedback. Despite the facts that obstacles to dietary adherence are multifaceted and that no single intervention would therefore serve as a panacea, a large majority of respondents believed that a home monitor to be an important contributor to the successful management of PKU.

Suggested Citation

  • Cihan Bilginsoy & Norman Waitzman & Claire O. Leonard & Sharon L. Ernst, 2004. "Living with Phenylketonuria: Perspectives of Patients and Their Families," Working Paper Series, Department of Economics, University of Utah 2004_04, University of Utah, Department of Economics.
  • Handle: RePEc:uta:papers:2004_04
    as

    Download full text from publisher

    To our knowledge, this item is not available for download. To find whether it is available, there are three options:
    1. Check below whether another version of this item is available online.
    2. Check on the provider's web page whether it is in fact available.
    3. Perform a search for a similarly titled item that would be available.

    References listed on IDEAS

    as
    1. Norman Waitzman & Cihan Bilginsoy & Claire O. Leonard & Sharon L. Ernst & Annie Prince, 2004. "The Effect of Phenylalanine Test Frequency on Management of Phenylketonuria (PKU)," Working Paper Series, Department of Economics, University of Utah 2004_03, University of Utah, Department of Economics.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Norman Waitzman & Cihan Bilginsoy & Claire O. Leonard & Sharon L. Ernst & Annie Prince, 2004. "The Effect of Phenylalanine Test Frequency on Management of Phenylketonuria (PKU)," Working Paper Series, Department of Economics, University of Utah 2004_03, University of Utah, Department of Economics.

    More about this item

    Keywords

    Phenylketonuria; dietary management; self-monitoring;

    JEL classification:

    • I18 - Health, Education, and Welfare - - Health - - - Government Policy; Regulation; Public Health
    • I19 - Health, Education, and Welfare - - Health - - - Other

    NEP fields

    This paper has been announced in the following NEP Reports:

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:uta:papers:2004_04. See general information about how to correct material in RePEc.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: (). General contact details of provider: http://edirc.repec.org/data/deuutus.html .

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service hosted by the Research Division of the Federal Reserve Bank of St. Louis . RePEc uses bibliographic data supplied by the respective publishers.