412 - Adolescent-Centered Development of a Bill of Rights for Adolescent Emergency Department Care

Publication Number: 4403.412

Colleen K. Gutman, University of Florida College of Medicine, Gainesville, FL, United States; Elizabeth Lehto, University of Louisville School of Medicine, Prospect, KY, United States; Tanya Vayngortin, Rady Children's Hospital San Diego, San Diego, CA, United States; Lauren Middlebrooks, Emory University School of Medicine, Atlanta, GA, United States; Zoe Grabinski, New York University Grossman School of Medicine, New York, NY, United States; Lauren Chernick, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, United States; Rachel Danzig, Comer Children's Hospital at University of Chicago Medical Center, Chicago, IL, United States; Fahd A. Ahmad, Washington University School of Medicine in St. Louis, St. Louis, MO, United States; Alicia Rolin, Children's National Health System, Washington, DC, United States; Allison Becker, Hassenfeld Children's Hospital at NYU Langone, New York, NY, United States; Kristin S. Stukus, Nationwide Children's Hospital, Columbus, OH, United States; Atsuko Koyama, University of Arizona College of Medicine - Phoenix, Phoenix, AZ, United States; Michelle Pickett, Medical College of Wisconsin, Milwaukee, WI, United States

Background: Confidentiality is a central tenet of adolescent health care. Although confidential adolescent care is supported by pediatric emergency department (PED) clinicians and leaders, there remain gaps in its provision. Further, adolescents may be unaware of their rights to confidential services. A standardized adolescent-specific ED bill of rights can bridge this gap.

Objective: To develop an Adolescent Bill of Rights (ABOR) for the PED, centered on adolescent values and priorities.

Design/Methods: We adapted a modified Delphi approach to engage adolescents seeking care in the PED. We conducted two iterative rounds of questionnaires to rank potential items for inclusion in the ABOR. Eligible participants were 14-18 years old and received care at one of 10 participating PEDs. Stages of questionnaire development are shown in Figure 1. We aimed to recruit 50 adolescents (five per site) per round to evaluate questionnaire items derived from literature, focus groups, and pilot testing. Round 1 items meeting predefined inclusion or exclusion thresholds were advanced to the final ABOR or dropped, with remaining items reassessed in Round 2. Participants could write free-text responses of proposed new items. The final ABOR included items reaching Round 1 inclusion consensus and those ranked in the top quartile for proportion ranked as one of the top three "most important" in the overall sample.

Results: A total of 93 adolescents participated (n=43 round 1, n=50 round 2, Table 1). Most were 16-17 years old and 61% had multiple PED visits within the past year. Round 1 evaluated 30 items, two of which met exclusion criteria and were not assessed in Round 2. Two of the items from Round 1 met immediate inclusion criteria: teens have the right to be treated with respect, and teens have the right to be treated without judgement. No additional items were generated from free-text data. In Round 2, all adolescents endorsed inclusion of the two Round 1 consensus items. Items related to attention to concerns, transparent communication about privacy, and opportunities for confidential discussion were consistently highly rated. Ultimately, nine items met consensus for inclusion in the ABOR (Table 2).

Conclusion(s): We rigorously developed an ABOR reflecting the values and priorities of adolescents receiving care in the PED; this included, but was not limited to, the right to confidential care. Emergency departments should consider incorporating the ABOR into their clinical setting. Future research will evaluate the implementation of the ABOR and its impact on adolescent care.

Figure 1
Stages of Questionnaire Development

Table 1
Table 1 10.30.pdfCharacteristics of Adolescent Participants

Table 2
Table 2 10.30.pdfItems included in the Adolescent Bill of Rights for the Emergency Department