[article] 
inJournal of Pediatric Nursing > Vol.36 No.5 (Sep-Oct) 2017 [10/18/2017]

Title :	Public Attitudes Toward Expanded Newborn Screening
Material Type:	printed text
Publication Date:	2017
Languages :	English (eng) Original Language : English (eng)
Keywords:	Newborn screening. Lysosomal storage diseases. Health literacy. Expanded newborn screening. Metabolomics. Whole exome sequencing.
Abstract:	Purpose There is limited research available on public knowledge and understanding of expanded newborn screening (NBS). The aims of this study were to assess current public knowledge and understanding of newborn screening disorders and procedures, perceived education needs, and preferences for the delivery of NBS information and education. An additional aim was to develop a beginning understanding of public attitudes toward screening for complex, severe, and in some cases untreatable disorders. Design and Methods In this preliminary descriptive study, eighty-eight participants completed surveys querying their general knowledge of NBS, preferred means of receiving NBS information and education, and their opinions about screening for severe disorders such as lysosomal storage diseases (LSD). Results Most study participants lacked general knowledge about current NBS practices, however, they supported expanding screening for severe and in some cases untreatable conditions. Most participants were enthusiastic about expanding NBS; however, those with more years of education were cautious regarding extensive costs of diagnosing and treating rare disorders. Conclusions Newborn screening continues to evolve through new technological developments and the addition of more disorders to screening panels. More research of into public acceptance of newborn screening is needed. Addressing the educational needs of the public is important for improving their understanding of NBS and promoting patient-centered care in the era of genomic screening.
Link for e-copy:	http://www.journals.elsevier.com/journal-of-pediatric-nursing/
Record link:	http://libsearch.siu.ac.th/siu/opac_css/index.php?lvl=notice_display&id=27419

[article] Public Attitudes Toward Expanded Newborn Screening [printed text] . - 2017.
Languages : English (eng) Original Language  : English (eng)
inJournal of Pediatric Nursing > Vol.36 No.5 (Sep-Oct) 2017 [10/18/2017]

Keywords:	Newborn screening. Lysosomal storage diseases. Health literacy. Expanded newborn screening. Metabolomics. Whole exome sequencing.
Abstract:	Purpose There is limited research available on public knowledge and understanding of expanded newborn screening (NBS). The aims of this study were to assess current public knowledge and understanding of newborn screening disorders and procedures, perceived education needs, and preferences for the delivery of NBS information and education. An additional aim was to develop a beginning understanding of public attitudes toward screening for complex, severe, and in some cases untreatable disorders. Design and Methods In this preliminary descriptive study, eighty-eight participants completed surveys querying their general knowledge of NBS, preferred means of receiving NBS information and education, and their opinions about screening for severe disorders such as lysosomal storage diseases (LSD). Results Most study participants lacked general knowledge about current NBS practices, however, they supported expanding screening for severe and in some cases untreatable conditions. Most participants were enthusiastic about expanding NBS; however, those with more years of education were cautious regarding extensive costs of diagnosing and treating rare disorders. Conclusions Newborn screening continues to evolve through new technological developments and the addition of more disorders to screening panels. More research of into public acceptance of newborn screening is needed. Addressing the educational needs of the public is important for improving their understanding of NBS and promoting patient-centered care in the era of genomic screening.
Link for e-copy:	http://www.journals.elsevier.com/journal-of-pediatric-nursing/
Record link:	http://libsearch.siu.ac.th/siu/opac_css/index.php?lvl=notice_display&id=27419