This Concise Critical Appraisal discusses a recent study identifying conditions associated with parents’ decision regret after their critically ill children were discharged from the pediatric intensive care unit.
Parents of critically ill children in the pediatric intensive care unit (PICU) face a myriad of medical decisions, some of which can lead to regret after PICU discharge. Although decision regret has been shown to lead to anxiety and posttraumatic stress, there is a paucity of medical literature characterizing regret about medical decisions made by parents or other medical surrogates.
1
In 2016, a two-site randomized comparative trial, the Navigate study, compared parent-reported outcomes of communication with members of the PICU team using the PICU Supports program compared with an informational brochure.
2 Ashworth et al performed a post hoc secondary analysis of the Navigate study to characterize decision regret and explore associated patient and parent characteristics.
3
Patients analyzed for this study were younger than 18 years and were either expected to remain in the PICU for more than 24 hours or had a risk of mortality greater than 4% on the Pediatric Index of Mortality 2 (PIM2).
3 Parents of PICU patients completed questionnaires at the time of enrollment and three to five weeks after PICU discharge.
The latter questionnaires included the Decision Regret Scale (DRS), a validated Likert scale tool that scores feelings of regret from 0 (no regret) to 100 (maximum regret). Parents were asked to complete the DRS based on the most important decision they made in the PICU. The authors categorized the decisions as procedures, respiratory support, medical management, symptom management, fluid/electrolytes/nutrition, parent-staff interaction, or no decision.
For analysis purposes, the authors categorized the DRS scores as no regret (DRS 0), mild regret (DRS 1-25), and moderate-severe regret (26-100). Demographics, illness characteristics and severity, and outcomes were recorded, and bivariate analysis was used to determine the associations between these factors and the DRS scores.
The average DRS score was 12.7. Of the 209 parents who completed both questionnaires, 102 (49%) reported no regret, 67 (32%) reported mild regret, and 40 (19%) reported moderate-severe regret. The decision categories reported as most important were procedures (29.2%), respiratory support (28.8%), medical management (24.5%), and no decision (20%).
Patient/parent characteristics associated with decision regret included PICU length of stay (LOS), the presence of an underlying respiratory disease at the time of admission, Hispanic ethnicity, and patient outcome. Multivariable logistic regression was applied to the bivariate analysis and showed that Hispanic ethnicity demonstrated greater odds of mild regret. PICU LOS and underlying respiratory disease demonstrated greater odds of moderate-severe regret.
The authors of this post hoc secondary analysis of the Navigate study identified conditions associated with decision regret in parents of PICU patients. Limitations of this study include having parents identify a troubling decision (20% did not) and having the questionnaires completed three to five weeks after discharge even though decision regret can occur over time, even years later. Additionally, the authors concede that many of the conditions associated with regret cannot be modified, but knowledge of these risk factors could allow practitioners to predict at-risk populations and work toward decreasing the incidence of regret.
References
- Becerra Pérez MM, Menear M, Brehaut JC, Légaré F. Extent and predictors of decision regret about health care decisions: a systematic review. Med Decis Making. 2016 Aug;36(6):777-790.
- Michelson KN, Frader J, Charleston E, et al; Navigate Study Investigators. A randomized comparative trial to evaluate a PICU navigator-based parent support intervention. Pediatr Crit Care Med. 2020 Sep;21(9):e617-e627.
- 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 Sep 1;25(9):795-803.
