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Abstract
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.
- Intensive Care Units, Neonatal
- Neonatology
- Resuscitation
Data availability statement
No data are available.
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Data availability statement
No data are available.
Footnotes
Contributors LB conceptualised and designed the study, designed the data collection instruments, collected data, drafted the initial manuscript and critically reviewed and revised the manuscript. LB is the guarantor/corresponding author. AM conceptualised and designed the study, designed the data collection instruments, collected data and critically reviewed and revised the manuscript. UG conceptualised and designed the study, collected data, carried out the formal analysis and critically reviewed and revised the manuscript. JK and WS conceptualised and designed the study and critically reviewed and revised the manuscript. FK-S and CC collected data and critically reviewed and revised the manuscript. MWT critically reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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