Parental Understanding of Newborn Screening for Cystic Fibrosis After a Negative Sweat-Test

Lang, Colleen Walsh; McColley, Susanna A.; Lester, Lucille A.; Ross, Lainie Friedman

doi:10.1542/peds.2010-2284

Cited by 33 publications

(56 citation statements)

References 27 publications

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“…Our results confirm the results of a recent non-controlled study showing that the early anxiety in parents induced by a positive screening result for CF was mostly decreased within three months thereafter, or that parents were reassured after genetic counseling and sweat test results [14]. The results after one and two years did not differ significantly [5].…”

Section: Discussionsupporting

confidence: 89%

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Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis

Langen

Pal²,

Reijntjens

et al. 2014

Molecular Genetics and Metabolism Reports

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BackgroundFalse-positive screening results in newborn screening for cystic fibrosis may lead to parental stress, family relationship problems and a changed perception of the child's health.Aim of the studyTo evaluate whether parental anxiety induced by a false positive screening result disappears after six months and to assess whether a special program to inform parents prior and during the screening procedure prevents or diminishes parental anxiety.MethodsProspective controlled study assessing the long term effects of false-positive test results of newborn screening for cystic fibrosis (NBSCF) on parental anxiety and stress by means of questionnaires sent to parents of 106 infants with a false positive newborn screening test and 318 randomly selected infants with a true negative screening test. Additionally we interviewed 25 parents of the false-positive group.ResultsParents showed negative feelings after being informed about the positive screening test result. After confirmation that their child was healthy and not suffering from CF, most parents felt reassured. After six months no difference in anxiety levels between both groups of parents was found. Well-informed parents in the false positive group experienced less stress.ConclusionsA positive screening test result induces parental anxiety but false positive test results in NBSCF do not seem to cause long-term anxiety. Well-informed parents show lower stress and anxiety levels.

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Section: Discussionsupporting

confidence: 89%

“…Very few studies report on internet as an information source for parents about NBS [14], [15], [16]. Two studies showed that half respectively 82% of the parents use internet after a positive screening result to look for additional information, which is comparable to our study (69%) [16].…”

Section: Discussionsupporting

confidence: 83%

Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis

Langen

Pal²,

Reijntjens

et al. 2014

Molecular Genetics and Metabolism Reports

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“…The concept of “carrier status” can be confusing for parents to understand and primary care providers' (PCPs') communication of these results has been criticized 7-14 . These challenges can lead to the development of parental psychosocial complications such as depression, anxiety, fear, and confusion 14-21 .…”

Section: Introductionmentioning

confidence: 99%

A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

Pean

Collins

Christopher

et al. 2012

Genetics in Medicine

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Purpose The purpose of this qualitative analysis was to assess parental acceptability of large-scale, telephone follow-up regarding their infants' newborn screening (NBS) results indicating carrier status for sickle cell hemoglobinopathy (SCH) and cystic fibrosis (CF). Methods Analysis of 195 interview transcripts focused on parents' responses to two open-ended questions “What was your reaction to being called by me?” and “What do you think of the state newborn screening program having follow-up people calling parents like you?” Responses were coded using conventional content analysis procedures and non-parametric tests were performed to analyze quantitative data. Results Most parents reported favorable opinions about the follow-up. Favorable opinions were associated with several emotional reactions to receiving follow-up (p<0.001), and three reasons why parents found the interview beneficial (p<0.05): it provided information, clarified NBS results, and answered questions. Seventeen parents of SCH carriers reportedly had not been told their infant's NBS results and received them for the first time during the follow-up interview. Conclusion Parents of CF and SCH carrier infants had favorable opinions and identified specific benefits to receiving follow-up contact. This analysis demonstrates an information deficit among carrier parents and illustrates the importance of NBS follow-up and need for comprehensive communication and counseling.

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“…The concept of "carrier status" can be confusing for parents to understand and primary care providers' (PCPs') communication of these results has been criticized [7][8][9][10][11][12][13][14] . These challenges can lead to the development of parental psychosocial complications such as depression, anxiety, fear, and confusion [14][15][16][17][18][19][20][21] .…”

Section: Introductionmentioning

confidence: 99%

“…These challenges can lead to the development of parental psychosocial complications such as depression, anxiety, fear, and confusion [14][15][16][17][18][19][20][21] . We contend that these consequences are potentially avoidable or alleviated by providing access to follow-up and informational resources.…”

Section: Introductionmentioning

confidence: 99%

A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

Pean¹,

Collins²,

Christopher³

et al. 2011

Genetics in Medicine

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Purpose-The purpose of this qualitative analysis was to assess parental acceptability of largescale, telephone follow-up regarding their infants' newborn screening (NBS) results indicating carrier status for sickle cell hemoglobinopathy (SCH) and cystic fibrosis (CF). Results-Most parents reported favorable opinions about the follow-up. Favorable opinions were associated with several emotional reactions to receiving follow-up (p<0.001), and three reasons why parents found the interview beneficial (p<0.05): it provided information, clarified NBS results, and answered questions. Seventeen parents of SCH carriers reportedly had not been told their infant's NBS results and received them for the first time during the follow-up interview. Methods-AnalysisConclusion-Parents of CF and SCH carrier infants had favorable opinions and identified specific benefits to receiving follow-up contact. This analysis demonstrates an information deficit among carrier parents and illustrates the importance of NBS follow-up and need for comprehensive communication and counseling.

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Parental Understanding of Newborn Screening for Cystic Fibrosis After a Negative Sweat-Test

Abstract: Parental knowledge about CF is high, but confusion about the child's carrier status and the concept of residual risk persist despite genetic counseling. Relatives express low interest in carrier testing.

Cited by 33 publications

References 27 publications

Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis

Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis

A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

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