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

Abstract

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.

Challenges in the implementation of an electronic referral system: A qualitative study in the Iranian context

“…Instability and frequent changes in management and policymaking hinder the implementation of health programs such as family physician and referral systems. This policy challenge has also been highlighted in other studies 40,41 . In addition, unstable political and economic conditions, particularly sanctions, pose significant threats to this programme and its expansion in low‐income and developing countries such as Iran 42,43 …”

“…This policy challenge has also been highlighted in other studies. 40,41 In addition, unstable political and economic conditions, particularly sanctions, pose significant threats to this programme and its expansion in low-income and developing countries such as Iran. 42,43 There were also sociocultural challenges in the implementation of the e-referral system.…”

Comparison of Fluorometric İmmunoassay and Tandem Mass Spectrometry Methods Used in the Diagnosis of Phenylalanine Metabolism Disorders in Turkish Children

“…Since clinically late diagnosis of PKU cases can cause serious mental problems, it is thought that it would be useful to investigate the presence and causes of diagnostic delay together with the studies to be performed in different clinical centers. In a study carried out by Heidari et al (22) in Iran, attention has been drawn to the difficulty faced by physicians to reach the families and to raise awareness in NSP for PKU, inability to implement the screening program entirely in the country as well as the social and financial problems of the families. Despite the effective implementation of NSP in Turkey, problems in reaching families on time and raising awareness are considered to be likely.…”

Factors Affecting the Establishment of Teledermatology in Iran; A Mixed-Method Study

“…To add to the data consistency, the data were analyzed by various researchers and external observers. To increase verifiability, the whole research process was explained from beginning to end [17][18][19].…”