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Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening.

Abstract：

AIM:To investigate parental attitudes to cystic fibrosis (CF) carrier detection of their infant by newborn screening (NBS). METHODS:Data were collected from a postal questionnaire sent to parents of infants identified as CF carriers by NBS in 1996-1997 (inclusive) and 2001 in Victoria, Australia (n = 66). RESULTS:Almost all parents remembered their child being identified as a CF carrier (97%: 1996/1997; 100%: 2001); yet the majority were unaware at the time that NBS could detect carriers (70%: 1996/1997; 49%: 2001). More parents in the later cohort reported having carrier testing compared with the earlier cohort (85% and 53% respectively) but recall was more uncertain in the earlier cohort when validated against health records. Cascade testing was not utilised frequently by other family members in either cohort. Residual risk of being a carrier if testing was negative was not well understood by parents. Some parents (28%: 1996/1997; 18%: 2001) had residual anxiety about the current health of their carrier child and their future reproductive decision making. Most parents were satisfied with the information provided to them at the time of the sweat test. Few differences were seen between the cohorts. CONCLUSION:Although the NBS process for CF in Victoria is working efficiently for the majority of families whose infant is identified as a carrier there are areas that can be improved. We recommend that greater attention should be given to informing parents that a consequence of NBS is CF carrier detection and strategies to improve utilisation of cascade testing should be developed.

journal_name

J Paediatr Child Health

journal_title

Journal of paediatrics and child health

authors

Lewis S,Curnow L,Ross M,Massie J

doi

10.1111/j.1440-1754.2006.00917.x

subject

Has Abstract

pub_date

2006-09-01 00:00:00

pages

533-7

issue

9

eissn

1034-4810

issn

1440-1754

pii

JPC917

journal_volume

42

pub_type

杂志文章

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