Evaluating decision regret after extremely preterm birth.

Objectives: Little is known about decision regret following extremely premature birth. We assessed decision regret in women who delivered an extremely premature infant, comparing decision regret scores based on resuscitation decision.

Methods: Electronic survey assessment of decision regret using a validated tool included women who delivered at 22-25 completed weeks of gestation at two hospitals 2004-2019. Comparison of 'active care', 'comfort care' and 'other' groups was quantified and comments reviewed.

Results: 442 of 787 (56%) eligible women were contacted, 242 of 442 (55%) completed surveys, response rate 242 of 787 (31%). Women not contacted were younger (p=0.0001) and/or delivered in an earlier year (p=0.002). There was a higher percentage of white women who completed the survey (p=0.004). Decision regret was elevated in all groups, varied widely, but was lower in 'active care' compared with 'comfort care' (Decision Regret Score 14 vs 39, p<0.0001). Lower decision regret occurred in women who recalled a prenatal consult (p=0.014) or identified as the primary decision-maker compared with women who perceived the doctor had a major role (p=0.02) or made the decision (p<0.0001). Lower decision regret occurred in women whose infant was alive at survey completion compared with women whose infant died in the hospital (p<0.0001) or after discharge (p=0.01).

Conclusions: Decision regret was elevated in all groups. Women who recalled prenatal consultation, identified as the primary decision-maker, chose intensive care and/or whose infant survived had lower regret scores.

Clinical trial registration: NCT04074525.