Liminal Space: A Retrospective Content Analysis of Ethics Consultation for Patients Aged 18-26.

PURPOSE: To characterize the primary ethical issue and contextual features of ethics consultation for patients aged 18-26 years based on setting (adult vs. pediatric). METHODS: A retrospective review of 965 ethics consultation notes to identify patients aged 18-26 years cared for in the pediatric or adult setting between January 1, 2016-December 31, 2020. We collected demographic information and used conceptual content analysis to identify the primary ethical issue and contextual features for each consult and analyzed these using descriptive statistics. RESULTS: We identified 46 consults (30 adult and 16 pediatric) for 40 unique patients (28 adult and 12 pediatric). The median age was 19 years in the pediatric setting and 24 in the adult setting. Fifty-three percent were female, 95% non-Hispanic, 68% White, and 76% were inpatient. The primary ethical issue in the adult setting was Refusal of Recommended Treatment (20%), while the dominant contextual issue was Communication Disputes/Conflicts Between the Staff and Patient (23%). The primary ethical issue for the pediatric setting was Goals of Care (31%) and the dominant contextual feature was concerns for Quality of Life (31%). DISCUSSION: The primary ethical issues and related contextual features this population experiences differ based on setting. Improved understanding of adolescent and young adult development, especially related to values formation, decision-making, and communication skills training may ameliorate some of these challenges. Referral patterns for this age group overall and particularly for patients on the ends of the spectrum and inpatients raise concerns for ethics consultation use. Further education about ethics services is recommended.

Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.

Pilot trial of iBDecide: Evaluating an online tool to facilitate shared decision making for adolescents and young adults with ulcerative colitis.

INTRODUCTION: This pilot, randomized controlled trial aimed to evaluate the usability, among adolescents and young adults (AYAs) with ulcerative colitis (UC), of a web-based tool ('iBDecide') designed to facilitate shared decision making (SDM). METHODS: AYAs with UC (n = 35) were randomized to intervention (iBDecide, n = 14) and control (n = 12) arms before a scheduled clinic visit. We measured the usability of iBDecide, SDM, preferred decision-making style, decision conflict and intervention use. RESULTS: Participants in the intervention group found iBDecide easy to use and agreed that it made them feel ready to participate in decision making and that they would use it to prepare for appointments. There were 130 visits to iBDecide, lasting on average 3 min, 41 s. The medication and nutrition trackers were among the most-viewed pages. Pages specifically designed to facilitate SDM were viewed only four times. Across groups, too few participants reported making decisions during clinic visits for decision-related measures to be reported. CONCLUSIONS: This pilot trial provides evidence for the usability of iBDecide and guidance for developing a larger-scale trial of a combined web-based and in-clinic SDM intervention. Overall, iBDecide shows promise in engaging AYAs with UC in SDM and condition management. PATIENT OR PUBLIC CONTRIBUTION: Patients, specifically AYAs with UC, and healthcare providers were involved in the design of this study's intervention, iBDecide. Additionally, the research team, from study conception to manuscript writing, included a young adult with inflammatory bowel disease. CLINICAL TRIAL REGISTRATION: This study was registered at clinicaltrials.gov (NCT04207008).