Genetic testing is increasingly part of routine clinical care. However, testing decisions may be characterized by regret as findings also implicate blood relatives. It is not known if genetic testing decisions are affected by the way information is presented (i.e., framing effects). We employed a randomized factorial design to examine framing effects on hypothetical genetic testing scenarios (common, life-threatening disease and rare, life-altering disease). Participants (n = 1012) received one of six decision frames: choice, default (n = 2; opt-in, opt-out), or enhanced choice (n = 3, based on the Theory of Planned Behavior). We compared testing decision, satisfaction, regret, and decision cognitions across decision frames and between scenarios. Participants randomized to ‘choice’ were least likely to opt for genetic testing compared with default and enhanced choice frames (78% vs. 83–91%, p < 0.05). Neither satisfaction nor regret differed across frames. Perceived autonomy (behavioral control) predicted satisfaction (B = 0.085, p < 0.001) while lack of control predicted regret (B = 0.346, p < 0.001). Opting for genetic testing did not differ between disease scenarios (p = 0.23). Results suggest framing can nudge individuals towards opting for genetic testing. These findings have important implications for individual self-determination in the genomic era. Similarities between scenarios with disparate disease trajectories point to possible modular approaches for web-based decisional support.

BACKGROUND: Structured transitional care (TC) is the planned, purposeful transfer from pediatric to adult care that aims to maintain high quality, developmentally appropriate continuous care. Relatively little is known about how endocrine TC is structured internationally, the process of TC and what outcomes are a priority for endocrine TC. This pilot study aimed to better understand endocrine TC and identify key elements for successful implementation internationally. METHODS: The Donabedian framework (structure-process-outcome) guided the international web-based survey examining TC programs for adolescents and young adults (AYAs) 16–25 years-old. The survey examined: 1) best practices i.e. six core elements of TC (Center for Health Care Transition Improvement ‘Got Transition’); 2) nursing involvement; 3) perceived importance of the ‘10 priority outcomes’ identified by an international multidisciplinary Delphi process (Fair et al. JAMA Pediatrics, 2016); and 4) promoters/barriers to implementation. Descriptive analysis was conducted for close-ended questions and thematic analysis for open-ended questions. Rankings by endocrine clinics were compared to the ‘10 priority outcomes’. RESULTS: Invitations were sent to authors of publications/posters on endocrine TC from the past 10 years. Eight responses were recorded from academic medical centers across seven countries with structured (n=3), semi-structured (n=2) and unstructured TC (n=3). Only 2/8 received institutional funding. Two practices involved nurses in assessing transition readiness and cited direct clinical care, therapeutic education and emotional support for AYAs/families as important contributions. Groups lacking nursing involvement expressed desire for a nursing role if financed. The most commonly used ‘Got Transition’ core elements were: providing supporting materials, confirming adult visit and consulting with adult providers. Only one group formally collected TC outcome data. “Self-management” was rated the most important TC outcome. “Understanding the condition/complications” and “attending medical appointments” were seen as having relatively higher priority for endocrine TC. Barriers related to lack of financial support and low institutional priority. Involving key stakeholders facilitated implementation. Having a dedicated nurse was noted as an opportunity for improving TC. CONCLUSIONS: Implementation of structured TC has been piecemeal and most practices do not fully utilize recommended best practices (‘Got Transition’). Few practices formally collect outcome data. The major perceived barrier to implementing TC is financial. Practices incorporating nurses value discipline-specific contributions. These pilot data point to a role for nursing in providing comprehensive, high quality, comprehensive care for AYAs with chronic endocrine conditions.