Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing
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-positi...
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| Veröffentlicht in: | Journal of developmental and behavioral pediatrics 1992-06, Vol.13 (3), p.181-186 |
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| container_issue | 3 |
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| container_title | Journal of developmental and behavioral pediatrics |
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| creator | TLUCZEK, A MISCHLER, E. H FARRELL, P. M FOST, N PETERSON, N. M CAREY, P BRUNS, W. T MCCARTHY, C |
| description | 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. |
| doi_str_mv | 10.1097/00004703-199206000-00005 |
| format | Article |
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H ; FARRELL, P. M ; FOST, N ; PETERSON, N. M ; CAREY, P ; BRUNS, W. T ; MCCARTHY, C</creator><creatorcontrib>TLUCZEK, A ; MISCHLER, E. H ; FARRELL, P. M ; FOST, N ; PETERSON, N. M ; CAREY, P ; BRUNS, W. T ; MCCARTHY, C</creatorcontrib><description>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.</description><identifier>ISSN: 0196-206X</identifier><identifier>EISSN: 1536-7312</identifier><identifier>DOI: 10.1097/00004703-199206000-00005</identifier><identifier>PMID: 1613113</identifier><language>eng</language><publisher>Hagerstown, MD: Lippincott Williams & Wilkins</publisher><subject>Anxiety - psychology ; Attitude to Health ; Biological and medical sciences ; Cystic Fibrosis - prevention & control ; Cystic Fibrosis - psychology ; False Positive Reactions ; Follow-Up Studies ; Gastroenterology. Liver. Pancreas. Abdomen ; Humans ; Infant ; Infant, Newborn ; Liver. Biliary tract. Portal circulation. Exocrine pancreas ; Medical sciences ; Neonatal Screening ; Other diseases. Semiology ; Parent-Child Relations ; Parents - education ; Parents - psychology ; Risk Factors ; Wisconsin</subject><ispartof>Journal of developmental and behavioral pediatrics, 1992-06, Vol.13 (3), p.181-186</ispartof><rights>1992 INIST-CNRS</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c434t-8e191228168f3b7f27125a465002b939b5c9acbeb090c9d8d275de6ace8854ee3</citedby></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=5350326$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/1613113$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>TLUCZEK, A</creatorcontrib><creatorcontrib>MISCHLER, E. H</creatorcontrib><creatorcontrib>FARRELL, P. M</creatorcontrib><creatorcontrib>FOST, N</creatorcontrib><creatorcontrib>PETERSON, N. M</creatorcontrib><creatorcontrib>CAREY, P</creatorcontrib><creatorcontrib>BRUNS, W. T</creatorcontrib><creatorcontrib>MCCARTHY, C</creatorcontrib><title>Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing</title><title>Journal of developmental and behavioral pediatrics</title><addtitle>J Dev Behav Pediatr</addtitle><description>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.</description><subject>Anxiety - psychology</subject><subject>Attitude to Health</subject><subject>Biological and medical sciences</subject><subject>Cystic Fibrosis - prevention & control</subject><subject>Cystic Fibrosis - psychology</subject><subject>False Positive Reactions</subject><subject>Follow-Up Studies</subject><subject>Gastroenterology. Liver. Pancreas. Abdomen</subject><subject>Humans</subject><subject>Infant</subject><subject>Infant, Newborn</subject><subject>Liver. Biliary tract. Portal circulation. Exocrine pancreas</subject><subject>Medical sciences</subject><subject>Neonatal Screening</subject><subject>Other diseases. Semiology</subject><subject>Parent-Child Relations</subject><subject>Parents - education</subject><subject>Parents - psychology</subject><subject>Risk Factors</subject><subject>Wisconsin</subject><issn>0196-206X</issn><issn>1536-7312</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>1992</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpFkMtOwzAQRS0EKqXwCUheIFgZ_IideIkqXlIlWIDEznKcSRVInWCnoP497oPijTX33vGMD0KY0WtGdX5D08lyKgjTmlOVKrKW5AEaMykUyQXjh2hMmVYk-e_H6CTGj5TgTIsRGjHFBGNijMyLDeCHeIU_fffTQjUH3NXYQ-ftYFscXQDwjZ9j6yscIPadj4CHDte2jUD6LjZD8w3YreLQOFw3ZUhSxAOk2s9P0dEmeLa7J-jt_u51-khmzw9P09sZcZnIBlIA04zzgqmiFmVe85xxaTMl08alFrqUTltXQkk1dboqKp7LCpR1UBQyAxATdLl9tw_d1zLNNosmOmhbm76yjCYXaxaySMFiG3RpzxigNn1oFjasDKNmzdb8sTV7thtJptbz3YxluYDqv3ELM_kXO99GZ9s6WO-auI9JIangSvwCk0aCCA</recordid><startdate>19920601</startdate><enddate>19920601</enddate><creator>TLUCZEK, A</creator><creator>MISCHLER, E. H</creator><creator>FARRELL, P. M</creator><creator>FOST, N</creator><creator>PETERSON, N. M</creator><creator>CAREY, P</creator><creator>BRUNS, W. T</creator><creator>MCCARTHY, C</creator><general>Lippincott Williams & Wilkins</general><scope>IQODW</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope></search><sort><creationdate>19920601</creationdate><title>Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing</title><author>TLUCZEK, A ; MISCHLER, E. H ; FARRELL, P. M ; FOST, N ; PETERSON, N. M ; CAREY, P ; BRUNS, W. T ; MCCARTHY, C</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c434t-8e191228168f3b7f27125a465002b939b5c9acbeb090c9d8d275de6ace8854ee3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>1992</creationdate><topic>Anxiety - psychology</topic><topic>Attitude to Health</topic><topic>Biological and medical sciences</topic><topic>Cystic Fibrosis - prevention & control</topic><topic>Cystic Fibrosis - psychology</topic><topic>False Positive Reactions</topic><topic>Follow-Up Studies</topic><topic>Gastroenterology. Liver. Pancreas. Abdomen</topic><topic>Humans</topic><topic>Infant</topic><topic>Infant, Newborn</topic><topic>Liver. Biliary tract. Portal circulation. Exocrine pancreas</topic><topic>Medical sciences</topic><topic>Neonatal Screening</topic><topic>Other diseases. Semiology</topic><topic>Parent-Child Relations</topic><topic>Parents - education</topic><topic>Parents - psychology</topic><topic>Risk Factors</topic><topic>Wisconsin</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>TLUCZEK, A</creatorcontrib><creatorcontrib>MISCHLER, E. H</creatorcontrib><creatorcontrib>FARRELL, P. M</creatorcontrib><creatorcontrib>FOST, N</creatorcontrib><creatorcontrib>PETERSON, N. M</creatorcontrib><creatorcontrib>CAREY, P</creatorcontrib><creatorcontrib>BRUNS, W. 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| ispartof | Journal of developmental and behavioral pediatrics, 1992-06, Vol.13 (3), p.181-186 |
| issn | 0196-206X 1536-7312 |
| language | eng |
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| subjects | Anxiety - psychology Attitude to Health Biological and medical sciences Cystic Fibrosis - prevention & control Cystic Fibrosis - psychology False Positive Reactions Follow-Up Studies Gastroenterology. Liver. Pancreas. Abdomen Humans Infant Infant, Newborn Liver. Biliary tract. Portal circulation. Exocrine pancreas Medical sciences Neonatal Screening Other diseases. Semiology Parent-Child Relations Parents - education Parents - psychology Risk Factors Wisconsin |
| title | Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing |
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