Parents?? Knowledge of Neonatal Screening and Response to False-Positive Cystic Fibrosis Testing

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

“…These risks include the potential that infants with CF could have a delayed diagnosis by primary care providers (PCPs) who believe a negative NBS result is definitive, 25 and that infants who are properly identified with CF by the screen could be exposed to health care-acquired infections during the diagnostic evaluation or early treatment. 23 The families of infants with a positive screening result but not CF could experience unnecessary anxiety before the diagnostic result, 26,27 and doubts regarding the health of their normal infant may persist even afterward. [28][29][30][31] Recognition of these risks is vital for optimal NBS-program design.…”

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

“…22 Others expressed gratitude that the problem was diagnosed early. 46 In one study, a few parents temporarily rejected their infants, and other parents reported being overprotective and more attached, but these reactions were not common in other studies. 22 Felt early screening and diagnosis were important.…”

“…25 Very few are aware that they could refuse testing. 30,46 Parents are unaware of and unable to consider the implications of testing, which, as we discuss in more detail below, can increase their distress if a result is abnormal. Parental knowledge of newborn screening does not appear to have improved during the 25-year span covered by this research, although the qualitative methods used make it difficult to assess trends across time.…”

“…Parental reactions include shock, concern, disbelief, depression, anxiety, and confusion. 22,46 Lack of familiarity with newborn screening and delays or other issues in reporting results increased parental distress, as did delays in diagnostic testing. 22,28,34 Some parents whose children were already symptomatic were relieved to have a diagnosis.…”

Aplicabilidad del Ages & Stages Questionnaires para el tamizaje del desarrollo psicomotor

“…si bien la sobre identificación se ha asociado con mayor (e innecesaria) ansiedad de los padres y efecto etiquetado, como ocurre en los Screening de enfermedades crónicas complejas 52,53 , en el caso del DSM, la consecuencia se relaciona con una mayor dedicación y estimulación del niño. Se ha evidenciado que los niños con tamizaje falsamente positivos, a largo plazo van a requerir mayor estimulación y apoyo en comparación con los verdaderos negativos 54,55 .…”