Newborn screening for CF in a regional paediatric centre: The psychosocial effects of false-positive IRT results on parents

Abstract

Neonatal screening for cystic fibrosis (CF) has been established in Leeds since 1975. The current method is measuring IRT and genotyping. Newborn screening for CF results in a small but significant number of false positives. This study explored the psychosocial reactions to such results in a group of parents (N=21) using semi-structured interviews. Responses were analysed using descriptive statistics and well-validated content analysis. Mothers described a range of emotions during the screening process including anxiety, distress and upset. Waiting for the repeat IRT test results was identified as the most emotionally difficult stage. Discussion focuses on good practice and implications for CF services.

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

“…While research in relation to newborn CF screening may suggest little evidence of enduring adverse psychosocial effects, 7,59,73 parents may be distressed or depressed during the process of newborn screening, 14,60,[74][75][76][77][78][79][80] which may relate to difficulties in understanding relatively complex information. 15,58 Health professional communication may also shape parents responses to newborn CF screening results, 81 which can include shock and anxiety, 14,58,59,82,83 with health professional communication following newborn carrier identification sometimes found wanting by parents in relation to both CF and SC.…”

“…13,57,64 Relevant work is generally limited to local descriptive reports on experience of newborn screening for SC [65][66][67][68][69] or CF. 58,59,[70][71][72] …”

“…To date, 11 qualitative studies have examined the views of parents with experience of newborn screening, 59,60,79,81,[93][94][95][96][97][98][99] although samples have sometimes combined parents of affected children, carrier children, or unaffected children. 59,81 This work suggests that while parents are supportive of newborn screening they may have concerns about the communication of results, 59 they may want information to be presented orally with an accompanying leaflet antenatally, 93 and their ability to recall information is reduced when it is provided to them during the emotionally demanding newborn period.…”

Effect of Dried Blood Spot Quality on Newborn Screening Analyte Concentrations and Recommendations for Minimum Acceptance Criteria for Sample Analysis

“…The prominence of these rings will increase as the interval between applications increases. A positive bias may result in a false-positive case, which should be avoided to prevent psychosocial harm (1,19 ). However, because a case will not be missed, we recommend that double-layered samples be accepted because repeat sample collection can also cause stress and anxiety to parents (2 ).…”

Rapid 2nd-Tier Test for Measurement of 3-OH-Propionic and Methylmalonic Acids on Dried Blood Spots: Reducing the False-Positive Rate for Propionylcarnitine during Expanded Newborn Screening by Liquid Chromatography–Tandem Mass Spectrometry

“…The impact of a screening recall on a family is substantial (7,8 ). Even after a normal retesting, a screening recall often results in increased anxiety over a child's health, an altered parentchild relationship, and increased hospitalizations for unrelated illnesses (2,6,9 ).…”