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A policy analysis of the national phenylketonuria screening program in Iran
Alireza Heidari1, Mohammad Arab2, Behzad Damari3
1Health Management and Social Development Research Center, Golestan University of Medical Sciences (GOUMS), Golha Alley, Gorgan, Iran. alirezaheidari7@gmail.com.
Insights
Iran's national phenylketonuria (PKU) screening program faced barriers like milk shortages and low awareness. Policy improvements require stable management, resources, family education, and stakeholder commitment for successful PKU diagnosis and treatment.
Area of Science:
- Public Health Policy
- Genetics Screening Programs
- Healthcare Management
Background:
- Phenylketonuria (PKU) screening is crucial for early diagnosis and preventing neurological damage.
- Analyzing the policies of Iran's national PKU screening (NaPS) program provides insights into public health implementation.
Purpose of the Study:
- To analyze the policy components of Iran's national PKU screening (NaPS) program using the policy triangle model.
- Identify facilitators and barriers in the implementation of the NaPS program.
Main Methods:
- Policy analysis utilizing the policy triangle model.
- Data collection through document review and 38 semi-structured interviews.
- Content analysis for documents and framework analysis for interviews.
Main Results:
- The NaPS program was initiated by the Ministry of Health and Medical Education (MOHME) with stakeholder involvement and evidence-based policies.
- Implementation was driven by parental persistence and executive support, despite opposition and insufficient resources.
- Key barriers included management turnover, Phe-free milk shortages, low family awareness, social stigma, and hospital administrator cooperation.
Conclusions:
- The policy triangle framework effectively explains the NaPS program's components.
- Enhancing the program requires stable leadership, adequate resources (human and Phe-free milk), improved family education, and committed hospital administrators.
- Effective stakeholder engagement is vital for the success of PKU screening programs.
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.
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