FIELD TESTING OF DECISION COACHING USING PATIENT DECISION AID WITH PARENTS FACING POTENTIAL BIRTH OF AN EXTREMELY PREMATURE INFANT
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.