Sunday, October 23, 2011
Grand Ballroom AB (Hyatt Regency Chicago)
Poster Board # 47
(DEC) Decision Psychology and Shared Decision Making

Ursula Guillen, MD1, Sanghee Suh, BS1, David Munson, MD1, Michael Posencheg, MD1, Elissa Truitt, MSSA, LSW1, Amiram Gafni, PhD2, John A.F Zupancic, MD, ScD3 and Haresh Kirpalani, BM, MSc1, (1)Children's Hospital of Philadelphia, Philadelphia, PA, (2)McMaster University, Hamilton, ON, Canada, (3)Harvard Medical School, Boston, MA

Purpose: Greater parental autonomy in decision-making at lower limits of neonatal viability warrants effective communication of complex information at a time of high stress. Transparent decision-aids may assist this goal.  Our objective was to develop and pretest a decision-aid to help parents facing extreme premature delivery during counseling regarding delivery room resuscitation. 

Method: Semi-structured interviews were conducted until saturation was reached, to define the content and presentation formats of a decision aid. Interviews with health care professionals and with parents of premature infants <26 wks GA identified items and formats of information valued by parents when making resuscitation decisions. Standard methods of item development, selection and reduction distilled items into a novel decision aid. Validity was evaluated by testing the hypothesis that an effective decision-aid would improve knowledge in two groups: Parents with a history of extreme prematurity ("experienced") and healthy women without prior knowledge of prematuirty ("naïve"). Sample size estimations were 10 per group (power 90%, α 0.05, with clinically relevant knowledge increment of 30%)

Result: 31 health care workers (nurses, neonatologists, obstetricians) and 30 parents were interviewed to obtain saturation of themes. Interviewees felt visual formats to present complex information on survival, short-term morbidities, and long-term outcomes facilitated their own preparation, recall, and understanding. Parents also stressed a need for numeric figures. Accordingly, a decision-aid as a set of cards with pictures and horizontal pictographs to show survival rates and complications were designed.  Pictographs depicted survival rates from 22+0 to 25+6 wks and risk for the individual components of neurodevelopmental impairment at 24 months. Pre- and post-test knowledge in a simulated counseling session showed significant improvement in 13 "experienced" parents (p=0.04); and an even greater improvement in 11 "naïve" (p<0.0001). Moreover, in a 5-question survey, most participants found the cards useful and easy to understand.

Conclusion: A decision-aid for parents facing extreme premature delivery may improve their understanding of complicated information during antenatal counseling.