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Peffault de Latour Rgis Huynh Lynn Ivanova Jasmina I. Totev Todor Bilginsoy Mehmet Antin Joseph Roy Anuja Duh Mei Sheng 《Annals of hematology》2020,99(4):743-752
Annals of Hematology - This study assessed treatment patterns and healthcare resource utilization (HRU) of patients with severe aplastic anemia (SAA) with insufficient response to immunosuppressive... 相似文献
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Bilginsoy C Waitzman N Leonard CO Ernst SL 《Journal of inherited metabolic disease》2005,28(5):639-649
Summary 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. 相似文献
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