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

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Author: Vernooij-van Langen, A.M.M. · Pal, S.M. van der · Reijntjens, A.J.T. · Loeber, J.G. · Dompeling, E. · Dankert-Roelse, J.E.
Type:article
Date:2014
Source:Molecular Genetics and Metabolism Reports, 1, 1, 334-344
Identifier: 515111
doi: doi:10.1016/j.ymgmr.2014.07.006
Keywords: Health · Newborn screening · Cystic fibrosis · False positive · Parental knowledge · Parental feelings · False positive · Chloride · Adult · Anxiety · Appetite disorder · Childbirth education · Chloride blood level · Controlled study · Crying · Cystic fibrosis · Depression · Dyspnea · Educational status · emotion · False positive result · Female · Follow up · Happiness · Hospital Anxiety and Depression Scale · Human · Infant · Knowledge · Laboratory diagnosis · Major clinical study · Male · Marriage · Muscle cramp · Newborn care · Newborn screening · Observational study · Parental stress · Pregnant woman · Prospective study · Reassurance · Reliability · Respiratory tract disease · Screening test · Semi structured interview · Sleep disorder · Stomach pain · Structured questionnaire · Sweat test · Healthy for Life · Healthy Living · Behavioural Changes · CH - Child Health · ELSS - Earth, Life and Social Sciences

Abstract

Background: False-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 study: To 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. Methods: Prospective 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. Results: Parents 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. Conclusions: A 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.