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Article: Parental attitudes on expanded newborn screening in Hong Kong

TitleParental attitudes on expanded newborn screening in Hong Kong
Authors
Issue Date2012
PublisherWB Saunders Co Ltd. The Journal's web site is located at http://www.elsevier.com/locate/puhe
Citation
Public Health, 2012, v. 126 n. 11, p. 954-959 How to Cite?
AbstractOBJECTIVES: Classical inborn errors of metabolism (IEM) affect about 1 in 4000 in Hong Kong. Despite the widespread implementation of expanded newborn screening in most countries, Hong Kong only screen for three conditions and the awareness of public has not been evaluated. This is the first study to examine the parental knowledge and attitudes towards expanded newborn screening in Hong Kong. METHODS: A cross-sectional survey was conducted in the Princess Margaret Hospital. Parents with babies born from 1st July to 31st October 2010 were randomly recruited. Fifteen questions relating to the knowledge of newborn screening and biochemical genetic disorders, preferences about the features of newborn screening, the economic values, and attitudes toward false positive results were asked. RESULTS: In total, 172 subjects were interviewed by phone (overall response rate 97.2%). There were 87.8% parents who had never heard of expanded newborn screening; 99.4% demanded more parental education; 83.5% thought the programme should be implemented immediately; 97.7% supported population screening, even though the diseases are incurable; 93.9% accepted the possibility of false positive and false negative results; 70.4% preferred a voluntary basis; 83.2% believed that the programme should be fully government funded as basic primary care; 98.8% agreed that Hong Kong should follow mainland China's policy on expanded newborn screening; 98.2% required pre-test counseling; and 96.4% required an explicit parental consent before blood sampling. CONCLUSIONS: The response from parents overwhelmingly favoured having expanded newborn screening in Hong Kong. Parental tolerance was high. Parents valued the parental autonomy with informed consent and pre-test counseling the most. The success of any screening programme requires the public participation and this study is the first to prove the parental call for an expanded newborn screening in Hong Kong.
Persistent Identifierhttp://hdl.handle.net/10722/189582
ISSN
2015 Impact Factor: 1.566
2015 SCImago Journal Rankings: 0.758
ISI Accession Number ID

 

DC FieldValueLanguage
dc.contributor.authorMak, CMen_US
dc.contributor.authorLam, CWen_US
dc.contributor.authorLaw, CYen_US
dc.contributor.authorSiu, CWKen_US
dc.contributor.authorKwong, LLen_US
dc.contributor.authorChan, KLen_US
dc.contributor.authorChan, WTen_US
dc.contributor.authorChow, KMen_US
dc.contributor.authorLee, KWen_US
dc.contributor.authorChan, WPen_US
dc.contributor.authorChan, AYWen_US
dc.date.accessioned2013-09-17T14:48:00Z-
dc.date.available2013-09-17T14:48:00Z-
dc.date.issued2012en_US
dc.identifier.citationPublic Health, 2012, v. 126 n. 11, p. 954-959en_US
dc.identifier.issn0033-3506en_US
dc.identifier.urihttp://hdl.handle.net/10722/189582-
dc.description.abstractOBJECTIVES: Classical inborn errors of metabolism (IEM) affect about 1 in 4000 in Hong Kong. Despite the widespread implementation of expanded newborn screening in most countries, Hong Kong only screen for three conditions and the awareness of public has not been evaluated. This is the first study to examine the parental knowledge and attitudes towards expanded newborn screening in Hong Kong. METHODS: A cross-sectional survey was conducted in the Princess Margaret Hospital. Parents with babies born from 1st July to 31st October 2010 were randomly recruited. Fifteen questions relating to the knowledge of newborn screening and biochemical genetic disorders, preferences about the features of newborn screening, the economic values, and attitudes toward false positive results were asked. RESULTS: In total, 172 subjects were interviewed by phone (overall response rate 97.2%). There were 87.8% parents who had never heard of expanded newborn screening; 99.4% demanded more parental education; 83.5% thought the programme should be implemented immediately; 97.7% supported population screening, even though the diseases are incurable; 93.9% accepted the possibility of false positive and false negative results; 70.4% preferred a voluntary basis; 83.2% believed that the programme should be fully government funded as basic primary care; 98.8% agreed that Hong Kong should follow mainland China's policy on expanded newborn screening; 98.2% required pre-test counseling; and 96.4% required an explicit parental consent before blood sampling. CONCLUSIONS: The response from parents overwhelmingly favoured having expanded newborn screening in Hong Kong. Parental tolerance was high. Parents valued the parental autonomy with informed consent and pre-test counseling the most. The success of any screening programme requires the public participation and this study is the first to prove the parental call for an expanded newborn screening in Hong Kong.en_US
dc.languageengen_US
dc.publisherWB Saunders Co Ltd. The Journal's web site is located at http://www.elsevier.com/locate/puheen_US
dc.relation.ispartofPublic Healthen_US
dc.rightsNOTICE: this is the author’s version of a work that was accepted for publication in <Journal title>. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in PUBLICATION, [VOL#, ISSUE#, (DATE)] DOI#en_US
dc.subject.meshHealth Knowledge, Attitudes, Practiceen_US
dc.subject.meshHong Kongen_US
dc.subject.meshMetabolism, Inborn Errors - diagnosisen_US
dc.subject.meshNeonatal Screening - organization and administrationen_US
dc.subject.meshParents - psychologyen_US
dc.titleParental attitudes on expanded newborn screening in Hong Kongen_US
dc.typeArticleen_US
dc.identifier.emailMak, CM: chloemak@hkucc.hku.hken_US
dc.identifier.emailLam, CW: ching-wanlam@pathology.hku.hken_US
dc.identifier.emailLaw, CY: ericlaw@pathology.hku.hken_US
dc.identifier.emailSiu, CWK: cwksiu@hku.hken_US
dc.identifier.emailChan, AYW: a1ywchan@hku.hken_US
dc.identifier.authorityLam, CW=rp00260en_US
dc.identifier.authorityLaw, CY=rp01586en_US
dc.identifier.doi10.1016/j.puhe.2012.08.002en_US
dc.identifier.pmid23148889en_US
dc.identifier.hkuros222669en_US
dc.identifier.hkuros221011-
dc.identifier.volume126en_US
dc.identifier.issue11en_US
dc.identifier.spage954en_US
dc.identifier.epage959en_US
dc.identifier.isiWOS:000311683600007-
dc.publisher.placeUnited Kingdomen_US

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