Prenatal (non)treatment decisions in extreme prematurity: evaluation of Decisional Conflict and Regret among parents.

OBJECTIVE

To evaluate Decisional Conflict and Regret among parents regarding the decision on initiating comfort or active care in extreme prematurity and to relate these to decision-making characteristics.

STUDY DESIGN

A nationwide, multicenter, cross-sectional study using an online survey in the Netherlands. Data were collected from March 2015 to March 2016 among all parents with infants born at 24-24 weeks gestational age in 2010-2013. The survey contained a Decisional Conflict and Decision Regret Scale (potential scores range from 0 to 100) and decision-making characteristics.

RESULTS

Sixty-one surveys were returned (response rate 27%). The median Decisional Conflict score was 28. From the subscores within Decisional Conflict, 'values clarity' revealed the highest median score of 42-revealing that parents felt unclear about personal values for benefits and risks of the decision on either comfort care or active care. The median Decision Regret score was 0. Regret scores were influenced by the actual decision made and by outcome: Decision Regret was lower in the active care group and in the survivor group.

CONCLUSION

We found little Decisional Conflict and no Decision Regret among parents regarding decision-making at 24 weeks gestation.