261944 Does provision of comprehensive information about newborn screening increase parents' decisional conflict?

Wednesday, October 31, 2012 : 9:30 AM - 9:50 AM

Beth Potter , Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, ON, Canada
Samantha Craigie, BSc, BA(Hons), MSc , Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, ON, Canada
Brenda Wilson, MBChB, MSc, MRCP(UK), FFPH , Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, ON, Canada
Julian Little , Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, ON, Canada
June Carroll , Mount Sinai Hospital, University of Toronto, Toronto, ON, Canada
David Castle , ESRC Innogen Centre, University of Edinburgh, Edinburgh, United Kingdom
Judith Allanson, MD , Department of Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada
Denise Avard , Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC, Canada
Pranesh Chakraborty , Newborn Screening Program, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada
Holly Etchegary , Clinical Epidemiology Division, Memorial University, St Johns, NF, Canada
Louise Lemyre , School of Psychology, Institute of Population Health, University of Ottawa, Ottawa, ON, Canada
Jennifer Milburn , Newborn Screening Program, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada
Fiona Miller , Department of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
Ruth Rennicks White, RN, BScN , Department of Obstetrics, Gynecology and Newborn Care, Ottawa Hospital Research Institute, Ottawa, ON, Canada
George Tawagi , Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, ON, Canada
Mark Walker , Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, ON, Canada
George Wells , Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, ON, Canada
  
Background: There is evidence that parental education about newborn screening (NBS) in Ontario and many other jurisdictions is limited, in part because screening is often implemented as part of routine newborn care rather than a parents' decision to make. Previous work suggests parents may prefer more comprehensive information about NBS, but NBS programs may be reluctant to provide more comprehensive education, with concerns about decreasing uptake or creating parental anxiety. Issues around consent and education have recently become more relevant with program expansions and debate about secondary bloodspot use. There is a need to better understand what content is most important for NBS education from parents' perspectives. Objectives: To measure and compare expecting mothers' responses to different educational messages about NBS so as to identify those that are most relevant with respect to decision-making. Methods: Pregnant women attending routine ultrasound clinics in Ottawa, Canada were invited to participate in a factorial survey. Participants receive different messages about NBS: the possibility of false positive/negative results; pain from the heel-prick; potential for overdiagnosis of infants not at serious risk; storage/secondary use of bloodspots; and parental choice/consent. We are investigating the association between receipt of particular messages and decisional conflict about participating in NBS. Results: Analysis of associations between individual messages and parents' decisional conflict (Decisional Conflict Scale) will be presented, as well as associations between secondary outcomes such as intent to screen and understanding. Implications for design and delivery of educational content in NBS programs will be discussed.

Learning Areas:
Administer health education strategies, interventions and programs
Assessment of individual and community needs for health education
Ethics, professional and legal requirements
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs

Learning Objectives:
1.Identify the information that is most relevant to parents for decision making in newborn screening 2.Discuss the implications for the design and delivery of education for newborn screening programs 3.Demonstrate the value of a factorial survey for identifying salient educational content about a public health screening program

Keywords: Neonatal Screening, Education

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the principal investigator for the research project from which this abstract was developed.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 5057.0: Community Roles in Public Health Genomics