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

Alireza Heidari1, Mohammad Arab2, Koorosh Etemad3

  • 1Ph.D. Candidate of Health Policy, Department of Management and Health Economic, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran.

Electronic Physician
|December 14, 2016
PubMed

Insights

Implementing Iran's National Phenylketonuria (PKU) Screening Program faces challenges in management, diagnosis, and treatment. Addressing these requires improved awareness, information systems, and stakeholder collaboration for better newborn health outcomes.

Area of Science:

  • Public Health
  • Genetics
  • Pediatrics

Background:

  • Newborn screening (NBS) is crucial for early detection and management of infant conditions.
  • Challenges in implementing NBS programs are common globally.
  • This study focuses on the specific hurdles within Iran's National Phenylketonuria (PKU) Screening Program.

Purpose of the Study:

  • To identify and analyze the challenges encountered in the implementation of Iran's National PKU Screening Program.
  • To provide insights for improving the effectiveness of newborn screening initiatives in the region.

Main Methods:

  • A qualitative study was conducted in 2015.
  • 38 health policymakers, managers, and PKU experts in Iran were purposively selected.
  • Data were collected through semi-structured interviews and analyzed using framework analysis.

Main Results:

  • Implementation challenges were categorized into five main themes: management, diagnosis, treatment, care, and patient family issues.
  • A total of 22 subthemes were identified within these main categories.
  • Findings highlight multifaceted obstacles impacting the PKU screening program's success.

Conclusions:

  • Key recommendations include enhancing managerial stability and stakeholder engagement.
  • Improving parental awareness, utilizing efficient information systems, and ensuring adequate insurance coverage are vital.
  • Legal backing for mandatory screening and addressing family-related problems are necessary for program success.
Abstract

Keywords:
ChallengesIranPhenylketonuriaScreening

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