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Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing
A Tluczek1, E H Mischler, P M Farrell
1Department of Pediatrics, University of Wisconsin, Madison.
Insights
Neonatal screening for cystic fibrosis (CF) using immunoreactive trypsinogen (IRT) tests causes parental anxiety and knowledge gaps. Many parents experienced relief after negative sweat tests, but education and communication are key to managing screening outcomes.
Area of Science:
- Pediatrics
- Genetics
- Public Health
Background:
- Neonatal screening for cystic fibrosis (CF) utilizes immunoreactive trypsinogen (IRT) testing on dried blood spots.
- The psychological impact and parental understanding of CF screening, particularly false-positive results, require further investigation.
Purpose of the Study:
- To assess parental knowledge, anxiety levels, and concerns following false-positive IRT results in neonatal CF screening.
- To identify factors influencing parental distress and misinformation related to CF screening.
Main Methods:
- A survey was conducted among parents of 104 infants in Wisconsin who received false-positive IRT tests.
- Data collected included parental knowledge of screening, emotional responses, and perceived impact on parenting behaviors.
Main Results:
- Parents exhibited significant knowledge deficits regarding neonatal screening and held misconceptions about test results.
- High levels of anxiety were reported, though parenting behaviors remained largely unchanged during the diagnostic waiting period.
- Negative sweat test results provided relief for most parents, but lower educational attainment and infant Apgar scores were linked to persistent concerns. Telephone contact was associated with increased misinformation.
Conclusions:
- False-positive IRT results in neonatal CF screening can cause parental anxiety and confusion, highlighting the need for improved communication strategies.
- Educational interventions and clear communication are crucial for addressing parental concerns and mitigating psychological distress associated with CF screening programs.
Abstract:
Neonatal screening for cystic fibrosis (CF) has become feasible through analyzing dried blood specimens for immunoreactive trypsinogen (IRT), but the benefits and risks of such a screening program remain to be delineated. This study, a survey of the parents of 104 Wisconsin infants with false-positive IRT tests, showed parents had knowledge deficits about neonatal screening in general, misconceptions about test results, and high levels of anxiety. Parenting behaviors were reportedly unchanged during the usual 3-day waiting period between the news of the abnormal screening test and the diagnostic sweat test. Most, but not all, parents were relieved by negative sweat test results subsequent to the abnormal IRT test. Factors associated with continued parental concern included having less than a high school education and/or having an infant with low Apgar scores. Additionally, those contacted by telephone were more likely to have misinformation and lingering concerns about the presence of CF in their child.
