title: Challenges of Implementation of the National Phenylketonuria Screening Program in Iran: A Qualitative Study.
abstract: BACKGROUND
  Newborn 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.
  
  
  METHODS
  In 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.
  
  
  RESULTS
  The 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.
  
  
  CONCLUSIONS
  Considering 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.
authors.affiliation: Ph.D. Candidate of Health Policy, Department of Management and Health Economic, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Alireza
authors.initials: A
authors.lastname: Heidari
authors.affiliation: Professor, Health Services Management, Department of Management and Health Economic, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Mohammad
authors.initials: M
authors.lastname: Arab
authors.affiliation: Assistant Professor, Department of Epidemiology, Environmental and Occupational Hazards Control Research Center, Faculty of Public Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
authors.forename: Koorosh
authors.initials: K
authors.lastname: Etemad
authors.affiliation: Assistant Professor, Community Medicine, Department of Social Determinant of Health, National Institute of Health Research, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Behzad
authors.initials: B
authors.lastname: Damari
authors.affiliation: Assistant Professor, Health Services Management, Health Management and Social Development Research Center, Golestan University of Medical Sciences, Gorgan, Iran.
authors.forename: Mohammad Javad
authors.initials: MJ
authors.lastname: Kabir
keywords: Challenges; Iran; Phenylketonuria; Screening