Wednesday, October 21, 2015: 11:00 AM
Grand Ballroom A (Hyatt Regency St. Louis at the Arch)

Gregory Moore, MD, FRCPC1, Brigitte Lemyre, MD, FRCPC1, Sandra Dunn, RN, PhD2, Thierry Daboval, MD, MSc, FRCPC1, Allyson L. Shephard, RN, MScN3, Sharon Ding3, Salwa Akiki, MSc3 and Margaret L. Lawson, MD, MSc, FRCP3, (1)Children's Hospital of Eastern Ontario, Ottawa, ON, Canada, (2)BORN Ontario, Ottawa, ON, Canada, (3)Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada
Purpose: Professional associations recommend shared decision making (SDM) with parents facing potential delivery of an extremely premature infant (EPI) to help them choose between palliative and intensive care.  Study objectives were to: i) revise a patient decision aid (PtDA) for counseling parents facing the potential birth of an EPI (Guillén et al 2012); ii) develop the Ottawa EPI PtDA;  iii) field test the Ottawa EPI PtDA with decision coaching (DC).

Methods: Pre-post test design. The published PtDA was evaluated using International PtDA Standards (IPDAS) criteria. We surveyed a multi-stakeholder group to identify key elements for the Ottawa EPI PtDA and sought feedback from the local SDM program, neonatologists and parents. Four neonatologists were trained in DC and alpha-tested our PtDA. Our PtDA and DC were field (beta) tested with women and partners at risk of delivering at 23 - 24 weeks gestational age (GA). Primary outcome measure was change in Decisional Conflict Scale (DCS) from pre-DC (T1), to immediately post-DC (T2), and 12-48 hours post-DC (T3), using paired T-tests. Secondary measures included change in choice predisposition and parents’ satisfaction with the PtDA and DC.

Results: The Ottawa EPI PtDA addressed the deficits in the published PtDA (IPDAS score 13/35) providing more information about quality of life, maternal impact, local outcome data, and the option of palliative care. Post-modification IPDAS score increased to 31/35 (p<0.001). Eleven DC sessions involved 18 parents (mean GA 23.3 weeks; 10 female, 8 male) and lasted 30-65 minutes (mean 50). Total DCS (mean±SD) decreased from 50.3±25.7 (T1) to 7.7±15.0 (T2) (p<0.001). Three parents didn’t complete T3 DCS due to infants’ early delivery. There was no change in DCS between T2 and T3 (n=15; p=0.51). Parents’ preferences: T1: 4 intensive care, 2 palliative care, 2 uncertain, and 10 unaware of options vs. T2: 12 intensive care, 5 palliative care, 1 uncertain, and all knew options. 94% of parents said DC with the Ottawa EPI PtDA helped to identify what they needed to make a decision.

Conclusion: The quality of an existing yet untested PtDA was improved using multi-source feedback, alpha-testing, and incorporation of local data. Field testing demonstrates the promise of the Ottawa EPI PtDA combined with DC to help parents engage in SDM at the limit of viability.