Volume 6, Issue 1 ( Summer 2020)                   SJNMP 2020, 6(1): 88-94 | Back to browse issues page

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Heidari A, Arab M, Damari B, Khatirnamani Z, Lotfi M. Parent preferences of patients with Phenylketonuria and healthcare providers: Comparison of screening outcomes with no screening. SJNMP 2020; 6 (1) :88-94
URL: http://sjnmp.muk.ac.ir/article-1-304-en.html
1- Golestan University of Medical Sciences , alirezaheidari7@gmail.com
2- Tehran University of Medical Sciences
3- Golestan University of Medical Sciences
Abstract:   (1836 Views)
Background & Aim: Phenylketonuria is one of the most common metabolic diseases that can lead to severe irreversible retardation if not screened and treated on time. The purpose of this study was to determine the parents' preferences of patients with phenylketonuria and healthcare providers to compare screening outcomes with non-screening.
Materials & Methods: This cross-sectional study was conducted in 2015. The participants consisted of 214 parents of phenylketonuria patients and 31 experts from selected phenylketonuria hospitals. Data collection tool was a questionnaire based on the Time Trade off approach. The data were analyzed by SPSS software and Wilcoxon test.
Results: The mean score of parental preference was in the screened and treated condition (0.74) and in the patient condition (0.47), which was statistically significant (P <0.001). The mean score of preferences of health care providers was in the screened and treated condition (0.73) and in the patient condition (0.29) which was statistically significant (p <0.001).
Conclusion: Given that the mean score of parental and health preferences in screened and untreated patients was significantly higher than in the non-screened condition, the quantitative and qualitative expansion of sampling and treatment centers in the regional and national dimensions was identified and Early treatment of patients as well as educational and supportive measures for parents for continuous diet therapy are recommended
Full-Text [PDF 634 kb]   (757 Downloads)    
Type of Study: Research | Subject: General
Received: 2020/02/4 | Revised: 2020/06/19 | Accepted: 2020/04/21 | Published: 2020/06/30 | ePublished: 2020/06/30

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