Associations of Patient and Parent Characteristics With Parental Decision Regret in the PICU: A Secondary Analysis of the 2015-2017 Navigate Randomized Comparative Trial.

Objectives: To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity.
Design: Secondary analysis of the Navigate randomized comparative trial (NCT02333396).
Setting: Two tertiary, academic PICUs.
Patients: Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score.
Interventions: None.
Measurements and Main Results: Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 ( sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively).
Conclusions: Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret.
Competing Interests: Drs. Michelson, Frader, Sorce, Clayman, and White’s institutions received from Patient-Centered Outcomes Research Institute. Dr. Sorce disclosed she is a member of the Executive Committee Board of the Society of Critical Care Medicine. Dr. White was supported by the National Institute of Health grant K24HL148314. Dr. White reports personal fees from American Thoracic Society and personal fees from UpToDate. Dr. Frader received funding from Direct Relief/Takeda Pharmaceuticals and Premier Research/Dicerna Pharmaceutical; he disclosed government work. Dr. Michelson’s institution received funding from the Greenwall Foundation and the National Institutes of Health; he received funding from the Friends of Prentice Northwestern Alliance for Research in Chicagoland Communities. The remaining authors have disclosed that they do not have any potential conflicts of interest.
(Copyright © 2024 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)