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High Levels of Decisional Conflict and Decision Regret When Making Decisions About Biologics
Ellen A Lipstein1, Daniel J Lovell, Lee A Denson
1*Division of Adolescent and Transition Medicine, Department of Pediatrics †Department of Pediatrics, James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center ‡University of Cincinnati College of Medicine §Division of Rheumatology ||Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati ¶Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Nationwide Children's Hospital #The Ohio State College of Medicine **Division of Rheumatology, Department of Pediatrics, Nationwide Children's Hospital, Columbus ††Division of Biostatistics and Epidemiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
Insights
Physician engagement, not just shared decision-making, impacts parental decisions about pediatric biologics. Improving communication can reduce conflict and regret for parents making these critical treatment choices.
Area of Science:
- Pediatric Rheumatology
- Pediatric Gastroenterology
- Health Psychology
Background:
- Decisions regarding biologic therapies for pediatric chronic conditions involve complex choices for parents.
- Understanding parental perceptions of the decision-making process is crucial for improving decision outcomes.
Purpose of the Study:
- To examine the association between parents' perceptions of the decision process and decision outcomes in pediatric biologic treatment decisions.
- To identify specific factors within the decision process that influence parental conflict and regret.
Main Methods:
- A survey was administered to parents of children with inflammatory bowel disease or juvenile idiopathic arthritis undergoing biologic treatment.
- Measures included decision control, physician engagement, decisional conflict, and regret.
- General linear models were used to analyze associations between decision process variables and outcomes.
Main Results:
- Shared decision-making was not significantly associated with reduced decisional conflict.
- Physician engagement behaviors, such as clear communication and active listening, were associated with both lower decisional conflict and regret.
- A significant portion of parents reported high decisional conflict and moderate to severe regret.
Conclusions:
- Improving decision outcomes for pediatric biologic use requires focusing on specific physician engagement behaviors, not solely on perceived decision control.
- Interventions aimed at enhancing physician communication and engagement may alleviate parental distress and improve treatment decision outcomes.
Objectives:
The aim of the study was to understand the association between parents' perceptions of the decision process and the decision outcomes in decisions about the use of biologics in pediatric chronic conditions.
Methods:
We mailed surveys to parents of children with inflammatory bowel disease or juvenile idiopathic arthritis who had started treatment with biologics in the prior 2 years and were treated at either of 2 children's hospitals. The survey included measures of the decision process, including decision control and physician engagement, and decision outcomes, including conflict and regret. We used means and frequencies to assess the response distributions. General linear models were used to test the associations between decision process and decision outcomes.
Results:
We had 201 respondents (response rate 54.9%). Approximately 47.0% reported using shared decision making. Each physician engagement behavior was experienced by the majority of parents, with the highest percentage reporting that their child's physician used language they understood and listened to them. Approximately 48.5% of parents had decisional conflict scores of 25 or greater, indicating high levels of conflict. Approximately 28.2% had no regret, 31.8% had mild regret, and the remaining 40.0% had moderate to severe regret. Shared decision making was not associated with improved decisional conflict, but physician engagement behaviors were associated with both decisional conflict and regret.
Conclusions:
Improving decision outcomes will require more than just focusing on who parents perceive as controlling the final decision. Developing interventions that facilitate specific physician engagement behaviors may decrease parents' distress around decision making and improve decision outcomes.
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