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Living with phenylketonuria: perspectives of patients and their families.

Authors
Bilginsoy-C; Waitzman-N; Leonard-CO; Ernst-SL
Source
J Inherit Metab Dis 2005 Sep; 28(5):639-649
NIOSHTIC No.
20037447
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 years in 1997 (response rate 64%). It included separate components for caretakers and patients aged 10 to 18 years. Although 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. Phenylalanine test results were regarded as the principal signal for the need for dietary adjustment. 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 a home monitor would facilitate better management of PKU through more regular and timely feedback.
Keywords
Metabolic-disorders; Phenyl-compounds; Diet; Dietary-effects; Health-surveys; Questionnaires; Children; Health-care; Health-care-personnel; Medical-monitoring; Medical-treatment; Disease-control
Contact
C. Bilginsoy, University of Utah, Department of Economics, 1645 Central Campus Dr., Room 308, Salt Lake City, UT 84112
CODEN
JIMDDP
Publication Date
20050901
Document Type
Journal Article
Email Address
bilginsoy@economics.utah.edu
Funding Type
Grant
Fiscal Year
2005
NTIS Accession No.
NTIS Price
Identifying No.
Grant-Number-T42-OH-008414
Issue of Publication
5
ISSN
0141-8955
Source Name
Journal of Inherited Metabolic Diseases
State
UT
Performing Organization
University of Utah, Salt Lake City, Utah
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