Brenda Wilson
Brenda Wilson
Professor, Epidemiology, Public Health and Preventive Medicine, University of Ottawa
Poster Session

Poster Session B

Monday, 20 April, 2015 - 19:00
Poster Number: 
116

Does Specific Educational Content Make Decisions about Newborn Screening Easier or more Difficult?

Wilson BJ1, Potter BK1, Carroll JC2, Little J1, Castle D3, Chakraborty P4, Craigie S5, Etchegary H6, Lemyre L1, Miller F2, Wells GA1, Milburn J7, Rennicks White R8, Tawagi G9, Walker M10

1. University of Ottawa, ON; 2. University of Toronto, ON; 3. University of Victoria, BC; 4. Children's Hospital of Eastern Ontario, Ottawa, ON; 5. McMaster University, ON; 6. Memorial University Newfoundland, NL; 7. Newborn Screening Ontario, Ottawa, ON; 8. BORN Ontario, Ottawa, ON; 9. The Ottawa Hospital, Ottawa, ON; 10. Ottawa Hospital Research Institute, Ottawa, ON

Background

Effective education of parents about newborn screening (NBS) is important even where screening is mandated. Potential benefits include promoting trust in health services, mitigating anxiety about the process and possible outcomes of NBS, and emphasizing the importance of follow up where needed. However, concerns are sometimes expressed that more comprehensive education may cause parental anxiety and lead to lower acceptance rates where screening is consent-based. There are published expert opinions on important NBS educational messages, but empirical evaluations are lacking. This study was designed to formally examine the effect of specific NBS education content on pregnant women’s decision-making.

Objectives

To evaluate the effect of content and number of key educational messages relating to newborn screening on pregnant women's decisional conflict and understanding.

Methods

The study used a factorial survey design. The study sample was 494 women with low-risk pregnancies attending routine second trimester ultrasound clinics in Ottawa, Ontario. Within a survey, participants were randomized to receive different combinations of messages on the following topics:

  • possibility of false positive/negative results
  • pain from the heel-prick
  • possibility for results of unclear clinical significance
  • storage/secondary use of bloodspots
  • the nature of parental consent.

In total, 32 (25) discrete message combinations were assessed.

The survey also incorporated items on participant demographic characteristics, screening intention, and the Decisional Conflict Scale (DCS).

We analyzed the association between each individual message and the primary outcome of decisional conflict (using the DCS score). Secondary analyses explored associations with respondent characteristics, understanding of key messages, and number of messages (cognitive burden).

Results

We observed low decisional conflict overall. We found no statistically significant differences between recipients and non-recipients of each key message, with the exception that recipients of the heel-prick pain message had lower DCS scores than those who did not receive it (p=0.01).

Knowledge questions were more likely to be answered correctly if the participant had received the corresponding message. Decisional conflict scores declined significantly with increasing number of messages received, indicating no evidence of cognitive overload. For participants on whom we have data, actual NBS uptake was 100%.

Conclusions

These results suggest that providing information on key aspects of NBS does not compromise expecting mothers’ decision-making, and in fact may enhance it. The factorial survey design is a useful approach in this context. The study has high internal validity, but it should be replicated in more diverse populations to confirm these conclusions and/or identify important modifying factors.