Factors influencing verbal intelligence and spoken language in children with phenylketonuria

Soleymani, Zahra; Keramati, Nasrin; Rohani, Farzaneh; Jalaei, Shohre

doi:10.1007/s13312-015-0644-8

Cited by 17 publications

(11 citation statements)

References 22 publications

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“…Although children with phenylketonuria who are treated early have average intelligence, they differ in cognitive performance when compared with their peers without phenylketonuria. Academic and cognitive functions of children with phenylketonuria are significantly lower than peers in the control group (2). It has also been reported that children with phenylketonuria may have low self-esteem, less motivation, loss of independence and reduced social confidence.…”

Section: Introductionmentioning

confidence: 95%

Health-related quality of life of parents of children with phenylketonuria in Tehran Province, Islamic Republic of Iran

Etemad¹,

Heidari²,

Setoodeh³

et al. 2020

East Mediterr Health J

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Background: Parents of children with phenylketonuria are at risk of reduced quality of life. Aims: This study determined the quality of life of parents of children with phenylketonuria in Tehran Province. Methods: The study was conducted in 2015 and included parents of children with phenylketonuria referred to three government children's hospitals in Tehran Province that provide phenylketonuria services. Data were collected using the Farsi version of the World Health Organization Quality of Life-Bref questionnaire. Analysis of variance, t-test, Pearson correlation coefficient and multiple linear regression were used to assess the relationship between quality of life domains and sociodemographic characteristics of the parent and child. Results: The study included 240 parents; 55% were mothers. Quality of life of parents in psychological, social relationships and environment domains was low. Significant relationships were found between: physical domain and age of child at phenylketonuria diagnosis (P = 0.044); psychological domain and parent's age (P = 0.019), child's age (P = 0.007) and parent's education (P = 0.015); social relationships domain and parent's age (P = 0.003), and education (P = 0.002), household income (P = 0.025) and child's age (P = 0.004; and environmental domain and residence (P = 0.034), parent's education (P = 0.007), household income (P = 0.002) and child's age (P = 0.049). In the multivariable analysis, parent's age and education, child's age, and household income were significantly associated with parent's quality of life. Conclusion: Given the low levels of quality of life in the parents, education and more financial support are recommended.

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Section: Introductionmentioning

confidence: 95%

Health-related quality of life of parents of children with phenylketonuria in Tehran Province, Islamic Republic of Iran

Etemad¹,

Heidari²,

Setoodeh³

et al. 2020

East Mediterr Health J

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“…Phenylketonuria (PKU) is the most common hereditary metabolic disorder in the world (1). Patients with PKU show high levels of phenylalanine in the blood serum, and thus develop neurological disorders such as mental retardation, seizures, behavioral problems, and developmental delays (2)(3).…”

Section: Introductionmentioning

confidence: 99%

A policy Analysis of Phenylketonuria Screening National Program in Iran

Heidari

Arab

Damari

2020

Preprint

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Background Phenylketonuria (PKU) Screening is a public health measure aimed at identifying the early cases and managing the affected infants and trying to reduce infant morbidity and mortality. The aim of this study was to analyze the policies of the PKU national screening program in Iran. Methods PKU screening program policies were analyzed according to the policy triangle model. Document review and 38 semi-structured interviews were used for data collection. Document review data were analyzed using content analysis and interview data were analyzed using framework analysis. Results The findings of the study were categorized according to the content (structure and organization, rules, bylaws and guidelines), process (agenda setting, formation, implementation, and evaluation of screening policies and programs), the policy context (political and executive factors, economic and financial factors, social and cultural factors), and the stakeholders(Genetics office, Network Development Bureau, Population and Family Health Bureau, Health Reference Laboratory, Pediatric Health Department, Health Vice-Chancellor of Medical Sciences, Health Ministry Deputy of Health, PKU Selected Hospitals, Pastor Institute, Food and Drug Administration and Research Centers. Welfare Organization, the Health Insurance Agency, the PKU Patient Support Association, the Post Company, and the Registry). Conclusions The policy triangle framework helped to explain the different components of the PKU screening program.

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“…The incidence of PKU is high in Iran (2); thus, the incidence of the disease was 1 in 10,000 in the Karamifar et al study (7) and 1.6 in 10,000 in the Habib et al study (8). The PKU screening program began in Iran in 2006 and blood samples of newborns are taken on the third to fifth days of birth for screening, and newborns with a phenylalanine level of 4 mg/dL or higher are referred for HPLC test for diagnosis confirmation.…”

Section: Introductionmentioning

confidence: 94%

“…Accumulation of phenylalanine and its metabolites without appropriate intervention during infancy leads to the occurrence of progressive cognitive-neurological damages in newborns (1). High levels of phenylalanine in the plasma typically cause mental disability, seizure, behavioral problems, and delay in motion and language evolution (2). The incidence of PKU may vary in different ethnic communities.…”

Section: Introductionmentioning

confidence: 99%

Challenges of Implementation of the National Phenylketonuria Screening Program in Iran: A Qualitative Study

et al. 2016

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IntroductionNewborn screening (NBS) is a public health measure aimed at identification of early cases, management of afflicted infants, and making efforts to reduce the morbidity and mortality among newborns. All countries may face challenges in implementation of screening programs. The present study aimed to determine the challenges of implementation of the National Phenylketonuria (PKU) Screening Program in Iran.MethodsIn this qualitative study, 38 health policymakers, managers, and PKU experts in Iran were purposively selected as the respondents in 2015. The semi-structured interview was used for collecting the required data and information. After transcription of interviews, their content was analyzed using framework analysis.ResultsThe results were categorized into five main themes and 22 subthemes. The main themes extracted from data were management challenges, diagnosis challenges, treatment challenges, care challenges, and patients’ family problems. Each category consisted of several subthemes.ConclusionConsidering the challenges of implementing this program, some measures such as increased stability of managers in the health system, greater interaction of the Ministry of Health and Medical Education with the heath stakeholders, improving the level of parents’ awareness, the use of efficient information systems, support and legal backing for requiring parents who refuse newborn screening for various reasons, and appropriate insurance coverage seem necessary to be taken.

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Factors influencing verbal intelligence and spoken language in children with phenylketonuria

Abstract: The study confirmed that diagnosis of newborns and control of blood phenylalanine concentration improves verbal intelligence and spoken language scores in phenylketonuria subjects.

Cited by 17 publications

References 22 publications

Health-related quality of life of parents of children with phenylketonuria in Tehran Province, Islamic Republic of Iran

Health-related quality of life of parents of children with phenylketonuria in Tehran Province, Islamic Republic of Iran

A policy Analysis of Phenylketonuria Screening National Program in Iran

Challenges of Implementation of the National Phenylketonuria Screening Program in Iran: A Qualitative Study

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