Psychological Effects of False-Positive Results in Cystic Fibrosis Newborn Screening: A Two-Year Follow-Up

Beucher, J.; Leray, Emmanuelle; Deneuville, E.; Roblin, Monique; Pin, Isabelle; Brémont, F.; Turck, Dominique; Giniès, J.-L.; Foucaud, P.; Rault, G.; Derelle, J.; David, Valérie; Journel, Hubert; Marchand, Sophie; Veillard, D.; Roussey, M.

doi:10.1016/j.jpeds.2009.12.003

Cited by 48 publications

(56 citation statements)

References 22 publications

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“…This is consistent with other research. 5,16,17 We also found that anxiety was reduced when parents were informed by their pediatricians and when he/she is able to provide immediate information and support. These results were consistent with research that suggests provider communication is a key factor in decreasing the emotional impact of learning the NBS result, in that those who provided understandable information could help mitigate distress.…”

Section: Discussionmentioning

confidence: 73%

The impact of false-positive newborn screening results on families: a qualitative study

Schmidt

Castellanos-Brown²,

Childress

et al. 2012

Genetics in Medicine

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Purpose: Newborn screening leads to improved treatment and disease outcomes, but false-positive newborn screening results may cause distress for parents. The purpose of this study was to describe the experiences of families who receive a false-positive newborn screening result in an attempt to discover ways to help improve the newborn screening communication process for families. methods:This was a qualitative study using two methods of data collection: in-depth, semistructured interviews and focus groups. Participants (N = 27) were parents whose children (ages 6-16 months) underwent follow-up testing after newborn screening and whose follow-up test results indicated that the newborn screening result was a false-positive.Results: Our analysis found that parents who have a false-positive newborn screening result experience five distinct stages. Most parents did not report long-term negative impacts of the experience, but some experienced some residual worry. Participants described effective provider communication as key in mitigating stress. Some parents identified the experience as leading to positive outcomes. conclusion: Identifying best practices for communication between the health care providers and parents is an essential component in improving the newborn screening process. Further research is needed to discover best practices for communication to minimize potential harm and maximize the benefits of newborn screening.Genet Med 2012:14(1):76-80

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Section: Discussionmentioning

confidence: 73%

The impact of false-positive newborn screening results on families: a qualitative study

Schmidt

Castellanos-Brown²,

Childress

et al. 2012

Genetics in Medicine

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“…It is clear that a small number of families are adversely affected psychologically, largely through false positive results. However, although parents frequently exhibit significant initial distress in relation to these results, this generally dissipates fairly rapidly over time 4 5. The existence of this data facilitates both the process of ethical appraisal of NBS programmes, as well as attempts to minimise the unintended, adverse effects.…”

mentioning

confidence: 99%

Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes

Kerruish

2011

J Med Ethics

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Advances in genomic medicine have lead to debate about the potential inclusion of genetic tests for susceptibility to common complex disorders in newborn screening programmes. Empirical evidence concerning psychosocial reactions to genetic testing is a crucial component of both ethical debate and policy development, but while there has been much speculation concerning the possible psychosocial impact of screening newborns for genetic susceptibilities, there remains a paucity of data. The aim of the study reported here is to provide some of this missing empirical evidence, using type 1 diabetes as an example of a common disorder with multiple significant genetic contributors to its aetiology. Semi-structured interviews were conducted with 11 parents of babies who had received increased risk results in a study that involved newborn screening for genetic susceptibility to type 1 diabetes. Interpretative phenomenological analysis was used to evaluate the data. The interview data suggest that the probabilistic nature of results of genetic susceptibility tests impacts upon all aspects of parents' psychosocial reactions, resulting in a complex and dynamic process quite different to that described in relation to current newborn screening programmes. While parents generally reported fairly minor levels of concern in response to news of their child's increased genetic risk, these worries frequently recurred, and perception of risk also varied and fluctuated over time. Both individual and contextual factors appeared to interact with the inherent uncertainty of the test result to contribute to the dynamic nature of parental reactions, and their behavioural responses. The implications of these findings for future research and for the debate concerning potential expansion of newborn screening are discussed.

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“…9 Similarly, others have found that majorities of parents (74%-96%) reported high anxiety in reaction to positive NBS results but upon receiving normal sweat test results, majorities (64%-86%) were relieved. 10,11 Although detected anxiety appears to be transient, 9 -11 1 to 6 years after identification, up to 29% of parents report worry about the health of their carrier child as well as potential difficulties posed for future relationships. Stress scores are also higher at 1 year postdisclosure among parents who received CF carrier versus negative results.…”

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confidence: 99%

Parent Experience With False-Positive Newborn Screening Results for Cystic Fibrosis

et al. 2016

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Although immediate distress was reported among mothers of FP infants, selected psychometric tools did not detect these concerns. The NBS center from which mothers were recruited minimizes delay between notification and confirmatory testing and ensures trained professionals are communicating results and facilitating follow-up. These factors may explain the presence of minimal psychosocial burden. The screening system reflected herein may be a model for NBS programs working to minimize FP-related psychosocial harm.

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Psychological Effects of False-Positive Results in Cystic Fibrosis Newborn Screening: A Two-Year Follow-Up

Cited by 48 publications

References 22 publications

The impact of false-positive newborn screening results on families: a qualitative study

The impact of false-positive newborn screening results on families: a qualitative study

Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes

Parent Experience With False-Positive Newborn Screening Results for Cystic Fibrosis

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