National Phenylketonuria Screening Program in Iran; Designing and Implementation

The purpose of phenylketonuria (PKU) screening is to assess the risk of, and prevent, the disease in the newborns likely inflicted with it. The aim of this study was to investigate why and how PKU screening was decided to be included in the national health agenda, initiated and implemented in Iran. This qualitative study was conducted based on the Kingdon’s framework model in 2015. The participants were thirty-eight policy-makers, managers and researchers selected by purposeful sampling.Data were collected using semi-structured interviews and analyzed using framework analysis. The physical and mental disabilities, medical and maintenance costs and the need for rehabilitation services were examples of the problem stream. In addition, sampling based on the National Congenital Hypothyroidism Program and implementation feasibility at the national level were examples of the policy stream. Finally, pressure by the patients' families, the Scientific Children Association and executive managers were examples of the political will stream. When the three streams occurred simultaneously, health policy-makers agreed to implement the program and then was opened the window of opportunity. Successful implementation of the National Phenylketonuria Screening Program in Iran has been the result of interactions among three streams, namely, nature of the problem, political will and optimal use of policy-makers of the window of opportunity opened