Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Feb 5;21(1):120.
doi: 10.1186/s12913-021-06116-w.

A policy analysis of the national phenylketonuria screening program in Iran

Alireza Heidari  1 , Mohammad Arab  2 , Behzad Damari  3
Affiliations

A policy analysis of the national phenylketonuria screening program in Iran

Alireza Heidari et al. BMC Health Serv Res. .

Abstract

Background: Phenylketonuria (PKU) screening is a public health measure taken to diagnose and treat the patients with PKU to prevent severe neurological disorders in them. The present study was aimed at analyzing the policies of the national PKU screening (NaPS) program in Iran.

Methods: PKU screening program policies were analyzed in compliance with 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 national PKU screening (NaPS) program was a decision made at the genetics department of Ministry of Health and Medical Education (MOHME) in Iran. Many internal and external stakeholders were involved in it and valid evidence was used to formulate the policies. Despite some opposition and insufficient support, the program was implemented due to the continuous persistence of parents, interested executives, formulated valid content and a top-down approach. The main barriers included rapid substitution of managers, shortage of Phe-free milk, little awareness of patients' families, social stigma, and inadequate co-operation of some hospital administrators.

Conclusions: The policy triangle framework contributed to explaining the different components of the PKU screening program. A successful PKU screening program requires more stability of senior managers in MOHME, enough human resources and Phe-free milk, educating patients' families, and commitment of hospitals administrators. Meanwhile, all the stakeholders need to be involved in the program effectively.

Keywords: National PKU screening (NaPS); Neonatal screening; Phenylketonuria (PKU); Policy analysis; Policy triangulation framework.

PubMed Disclaimer

Conflict of interest statement

There are no conflicts of interest.

Figures

Fig. 1
Fig. 1
Basic health policy analysis model based on Walt and Gilson triangle framework
Fig. 2
Fig. 2
The policy framework of National Phenylketonuria Screening (NaPS) Program in Iran based on Walt & Gilson Triangle Framework
See this image and copyright information in PMC

References

    1. Gunduz M, Arslan N, Unal O, Cakar S, Kuyum P, Bulbul SF. Depression and anxiety among parents of phenylketonuria children. Neurosciences. 2015;20(4):350–356. doi: 10.17712/nsj.2015.4.20150319. - DOI - PMC - PubMed
    1. Purevsuren J, Bolormaa B, Narantsetseg C, Batsolongo R, Enkhchimeg O, Bayalag M, et al. The first Mongolian cases of phenylketonuria in selective screening of inborn errors of metabolism. Mol Genetics Metab Rep. 2016;9:71–74. doi: 10.1016/j.ymgmr.2016.10.008. - DOI - PMC - PubMed
    1. Soleymani Z, Keramati N, Rohani F, Jalaei S. Factors influencing verbal intelligence and spoken language in children with phenylketonuria. Indian Pediatr. 2015;52(5):397–401. doi: 10.1007/s13312-015-0644-8. - DOI - PubMed
    1. Etemad K, Heidari A, Setoodeh A, Shayeganrad A, Akhlaghi A, Azizi M, et al. Health-related quality of life of parents of children with phenylketonuria in Tehran Province, Islamic Republic of Iran. East Mediterr Health J. 2020;26(3):331–339. doi: 10.26719/emhj.19.045. - DOI - PubMed
    1. Binnafar S, Mahdieh N. Genetics of phenylketonuria in Iran: a review study. J Mazandaran Univ Med Sci. 2017;27(147):446–455.