383 - The Pediatric Anesthesia Informed Consent Tool (PACT) to Improve Patient and Parent Engagement: Development and Pilot Testing

Publication Number: 4375.383

Sunny Jeong, University of Western Australia, Crawley, Western Australia, Australia; Michelle A. Stage, University of Rhode Island, Kingston, RI, United States; Richard H. Blum, Boston Children's Hospital and Harvard Medical School, Waban, MA, United States; Elaine C. Meyer, Center for Bioethics, Harvard Medical School, Cranston, RI, United States; Mollie A. Ruben, University of Rhode Island, Kingston, RI, United States; Danielle Blanch-Hartigan, Bentley University, Waltham, MA, United States; David B. Waisel, None, Leakey, TX, United States; Stephanie Kukora, Children's Mercy Bioethics Center, Kansas City, MO, United States

Background: An optimal informed consent process (ICP) for pediatric anesthesia is critical for a collaborative patient-parent-anesthesiology team partnership and shared decision-making. It is unclear whether the current ICP encourages patients and parents to fully understand and consider the benefits/risks of anesthesia, especially when surgery is necessary. Additionally, the inherent stress and anxiety of a child's surgery can contribute to parents' misinterpretation or misunderstanding of anesthesia information, including hesitancy to ask questions and voice concerns.

Objective: Our aim was to develop and pilot an evidence-based Pediatric Anesthesia Informed Consent Tool (PACT) and assess parental and patient feedback on its acceptability, accessibility, and usefulness.

Design/Methods: We developed the PACT through literature review and interviews with anesthesiologists and health communication experts which identified the following important goals: 1) foster a better understanding of PA-ICP by the pediatric patient and parent, 2) engender more informative and efficient ICP discussions, and 3) build rapport between patient-parent-clinician.These goals helped to develop the PACT. (Figure 1).

To examine the PACT's impact, a mixed-methods study was conducted at a free-standing quaternary children's hospital. A purposive sample of 20 patients (10-18 years old), undergoing spin surgeries, and their parents were recruited. The PACT was shared with patients and parents at the time of pre-admission testing by the primary researcher. Patient and parent user feedback on PACT was collected using qualitative patient interviews and quantitative parent questionnaires.

Results: Demographics of participating parents are in Table 1. On the questionnaire, 85% (17/20) of parents reported using the tool. Of those, 59% (10/17) reported that the PACT was very easy to use and 41% (7/17) reported it was easy to use. All but one parent (16/17, 94%) evaluated the PACT's features and contents positively. Interviews of patients revealed two major themes (Table 2): 1) Evaluation of PACT (subthemes: Utilization, Lack of Utilization, Willingness to Use, and Suggestions) and 2) Experiences with Care Team (subthemes: Positive Experiences, Patient Autonomy, Negative Experiences, and Suggestions).

Conclusion(s): Patients and parents have diverse perspectives and considerations during the PA-ICP. Asking pediatric patients directly about their informed consent experiences can identify areas of improvement. Findings suggest that incorporation of PACT is logistically feasible, well received, and useful for most pediatric patients and parents.

Figure 1.
The Pediatric Anesthesia Informed Consent Tool

Table 1.
Parental Demographic Characteristics

Table 2.
Pediatric Patient Qualitative Evaluation of PACT