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Design and Participants: This analysis identified self-reported meaningful decisions made by parents (in two tertiary, academic PICUs) and determined patient/parent characteristics associated with development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity. Parents of patients who were expected to remain in the PICU more than 24 hours from enrollment, or who had a mortality risk greater than 4% based on Pediatric Index of Mortality 2 score, were included. The enrollment questionnaire included Patient-Reported Outcomes Measurement Information System scales for informational social support, depression, and anxiety. The 3-to-5-week postdischarge questionnaire added the Decision Regret Scale (no regret [DRS=0], mild regret [DRS=1-25], and moderate-severe regret [DRS=26-100]). Patient outcome was divided into four categories: death, serious PICU event, PICU length of stay (LOS) fewer than 12 days without a serious event, or PICU LOS 12 days or more without a serious event. Chi-square, Fisher’s exact test, ANOVA, and multinomial logistic regression were used.
Results: Parents (N=233; of 209 patients) were aged median 41 years; 82% female; and 62% White, 18% Black, and 18% Hispanic. 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 regret (DRS>0), with 19% moderate-severe (mean=13 [SD=18]). Parental Hispanic ethnicity was associated with greater odds ratio (OR=3.1 [95% CI=1.4-7.1]) of mild regret. Increased PICU LOS or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR=1.0 [1.0-1.1]; and OR=2.9 [1.2-6.9], respectively).
Commentary: This analysis of parents’ post-PICU discharge surveys found that 51% of parents had some decisional regret; Hispanic ethnicity, PICU LOS, and underlying respiratory diagnosis were associated with regret. However, this study does not examine the underlying reasons for regret, limiting the study’s clinical applicability. Communication gaps and systemic factors (eg, language access, staff cultural competence training) may all contribute to these findings. Further, by focusing on a single key decision, the study may have overlooked broader or cumulative sources of regret. We need to examine decisional regret more broadly and the underlying reasons for these findings; the voices of those at risk for decisional regret will be essential in this work.
Bottom Line: Over half of families have decisional regret after PICU discharge, with demographic and clinical risk factors for regret. The clinical implications of this work are limited until future research addresses the underlying reasons for these findings.
Reviewer: C. Christian Paine, MD, University of Mississippi Medical Center, Jackson, MS
References:
1. Michelson KN, Patel R, Haber-Barker N, et al. End-of-life care decisions in the pediatric intensive care unit: roles professionals play. Pediatr Crit Care Med. 2013;14:e34-e44.
2. Brehaut JC, O’Connor AM, Wood TJ, et al. Validation of a decision regret scale. Med Decis Making. 2003;23:281-292.
Source: Ashworth RC, Malone JR, Franklin D, et al. Associations of patient and parent characteristics with parental decision regret in the PICU: a secondary analysis of the 2015–2017 Navigate randomized comparative trial. Pediatr Crit Care Med. 2024;25(9):795-803. doi:10.1097/PCC.0000000000003534.
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