Published online August 10, 2009
PEDIATRICS Vol. 124 No. 3 September 2009, pp. 950-958 (doi:10.1542/peds.2008-3148)
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ARTICLE

Informing Parents About Expanded Newborn Screening: Influences on Provider Involvement

Robin Z. Hayeems, PhDa, Fiona A. Miller, PhDa, Julian Little, PhDb, June C. Carroll, MDc, Judith Allanson, MDd,e, Pranesh Chakraborty, MDd,e, Brenda J. Wilson, MBChBb, Jessica P. Bytautas, BAa and Robert J. Christensen, BSca

a Departments of Health Policy, Management, and Evaluation
c Family and Community Medicine, Mount Sinai Hospital, University of Toronto, Toronto, Ontario, Canada
b Departments of Epidemiology and Community Medicine
e Pediatrics, University of Ottawa, Ottawa, Ontario, Canada
d Department of Genetics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada

OBJECTIVE: Expanded newborn screening (NBS) identifies some disorders for which clinical benefit is uncertain, as well as "incidental" findings (eg, carrier status), thus enhancing the need to inform parents about NBS before sample collection.

METHODS: A self-complete survey was sent to a cross-sectional, stratified, random sample of 5 provider groups in Ontario (obstetricians, midwives, family physicians, pediatricians, and nurses). Univariate and multivariate analyses were used to investigate the effects of core beliefs, perceived barriers, and demographic characteristics on the reported frequency of informing parents about NBS before sample collection.

RESULTS: Virtually all of the midwives and almost half of the nurses reported discussing NBS with parents, whereas less than one sixth of the physicians did so. Providers who perceived a responsibility to inform parents were 3 times more likely to report doing so than those who did not perceive this responsibility (odds ratio: 2.9 [95% confidence interval: 2.1–4.1]). Those who lacked confidence to inform parents were 70% less likely to discuss NBS with parents compared with those who did not experience this cognitive barrier (odds ratio: 0.3 [95% confidence interval: 0.2–0.4]). Controlling for these covariates, family physicians and obstetricians were more likely than pediatricians to inform parents.

CONCLUSIONS: These results provide guidance for capacity building among providers who are positioned to inform parents about NBS before sample collection. Our findings call for targeted educational interventions that consider patterns of provider practice related to prenatal and NBS care, seek to redress confidence limitations, and engage key provider groups in the importance of this professional responsibility.

Key Words: public policy • newborn screening • survey design • professional attitudes

Abbreviations: NBS—newborn screening • OR—odds ratio • CI—confidence interval

Accepted Feb 23, 2009.


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