Even in the era of multigene panel testing, these data suggest that telephone disclosure of cancer genetic test results is as an alternative to in-person disclosure for interested patients after in-person pretest counseling with a genetic counselor.
Purpose Multiplex genetic testing, including both moderate- and high-penetrance genes for cancer susceptibility, is associated with greater uncertainty than traditional testing, presenting challenges to informed consent and genetic counseling. We sought to develop a new model for informed consent and genetic counseling for four ongoing studies. Methods Drawing from professional guidelines, literature, conceptual frameworks, and clinical experience, a multidisciplinary group developed a tiered-binned genetic counseling approach proposed to facilitate informed consent and improve outcomes of cancer susceptibility multiplex testing. Results In this model, tier 1 “indispensable” information is presented to all patients. More specific tier 2 information is provided to support variable informational needs among diverse patient populations. Clinically relevant information is “binned” into groups to minimize information overload, support informed decision making, and facilitate adaptive responses to testing. Seven essential elements of informed consent are provided to address the unique limitations, risks, and uncertainties of multiplex testing. Conclusion A tiered-binned model for informed consent and genetic counseling has the potential to address the challenges of multiplex testing for cancer susceptibility and to support informed decision making and adaptive responses to testing. Future prospective studies including patient-reported outcomes are needed to inform how to best incorporate multiplex testing for cancer susceptibility into clinical practice.
Telephone disclosure of cancer genetic test results is noninferior to in‐person disclosure. However, how patients who prefer in‐person communication of results differ from those who agree to telephone disclosure is unclear but important when considering delivery models for genetic medicine. Patients undergoing cancer genetic testing were recruited to a multicenter, randomized, noninferiority trial (NCT01736345) comparing telephone to in‐person disclosure of genetic test results. We evaluated preferences for in‐person disclosure, factors associated with this preference and outcomes compared to those who agreed to randomization. Among 1178 enrolled patients, 208 (18%) declined randomization, largely given a preference for in‐person disclosure. These patients were more likely to be older (P = 0.007) and to have had multigene panel testing (P < 0.001). General anxiety (P = 0.007), state anxiety (P = 0.008), depression (P = 0.011), cancer‐specific distress (P = 0.021) and uncertainty (P = 0.03) were higher after pretest counseling. After disclosure of results, they also had higher general anxiety (P = 0.003), depression (P = 0.002) and cancer‐specific distress (P = 0.043). While telephone disclosure is a reasonable alternative to in‐person disclosure in most patients, some patients have a strong preference for in‐person communication. Patient age, distress and complexity of testing are important factors to consider and requests for in‐person disclosure should be honored when possible.
Purpose Multigene panels (MGPs) are increasingly being used despite questions regarding their clinical utility and no standard approach to genetic counseling. How frequently genetic providers use MGP testing and how patient-reported outcomes (PROs) differ from targeted testing (eg, BRCA1/2 only) are unknown. Methods We evaluated use of MGP testing and PROs in participants undergoing cancer genetic testing in the multicenter Communication of Genetic Test Results by Telephone study (ClinicalTrials.gov identifier: ), a randomized study of telephone versus in-person disclosure of genetic test results. PROs included genetic knowledge, general and state anxiety, depression, cancer-specific distress, uncertainty, and satisfaction. Genetic providers offered targeted or MGP testing based on clinical assessment. Results Since the inclusion of MGP testing in 2014, 395 patients (66%) were offered MGP testing. MGP testing increased over time from 57% in 2014 to 66% in 2015 (P = .02) and varied by site (46% to 78%; P < .01). Being offered MGP testing was significantly associated with not having Ashkenazi Jewish ancestry, having a history of cancer, not having a mutation in the family, not having made a treatment decision, and study site. After demographic adjustment, patients offered MGP testing had lower general anxiety (P = .04), state anxiety (P = .03), depression (P = .04), and uncertainty (P = .05) pre-disclosure compared with patients offered targeted testing. State anxiety (P = .05) and cancer-specific distress (P = .05) were lower at disclosure in the MGP group. There was a greater increase in change in uncertainty (P = .04) among patients who underwent MGP testing. Conclusion MGP testing was more frequently offered to patients with lower anxiety, depression, and uncertainty and was associated with favorable outcomes, with the exception of a greater increase in uncertainty compared with patients who had targeted testing. Addressing uncertainty may be important as MGP testing is increasingly adopted.
At a time of significant upheaval in American health policy, maintaining a focus on a "North Star" is critical. For implementation science, this star is the knowledge base on how to optimally disseminate evidence related to health and health care, how to implement interventions to improve care within the many settings where people receive health care and make health-related decisions, and how to improve the health of the global population. To that end, the end of 2016 brought over 1100 engaged and activated "disciples of D & I" to Washington, DC for the 9 th Annual Conference on the Science of Dissemination and Implementation in Health. Once again, the accompanying abstracts in this issue demonstrate the breadth, depth and vigor of this continually expanding and evolving subset of health research. During three dynamic plenaries with rows and rows of filled seats and packed concurrent sessions presenters and attendees shared findings, raised methodologic and other challenges, and discussed future priorities, trends, and next steps for this community of research. For the third year in a row, we were buoyed by a strong partnership, co-led by AcademyHealth and the National Institutes of Health (NIH), with co-sponsorship from others committed to implementation science: the Agency for Healthcare Research and Quality (AHRQ), the Patient Centered Outcomes Research Institute (PCORI), the Robert Wood Johnson Foundation (RWJF), and the US Department of Veterans Affairs (VA). The multidisciplinary program planning committee informed the development of the key themes for the conference, identified the plenary sessions topics and speakers, established track leads to manage the review process for concurrent panels, papers, and posters, and convened a scientific advisory panel to advise on the overall conference, thus ensuring a robust, inclusive, and rigorous process. Together, the opening keynote address and the three plenary panel sessions set a tone of innovation and dialogue, raised critical issues, surfaced different perspectives, and ensured that follow on lunchtime and hallway discussions delved deeper into thorny challenges facing the field. Roy Rosin, Chief Innovation Officer for the University of Pennsylvania's Perelman School of Medicine, introduced the audience to a range of methods for rapid testing, innovation in healthcare delivery, and lessons learned from other industries to maximize potential of new practices to be scaled-up. Each of the three plenary panels presented a general discussion on a high priority challenge for dissemination and implementation (D & I) research. A panel on the balance between intervention and implementation fidelity and local adaptation touched on the very real dynamic that is playing out in communities across this country as policy and payment changes are driving providers and others to seek new ways to solve the challenges in their particular contexts. A panel on the longerterm decisions around sustainment or de-implementation of interventions could not be more timely given the "im...
Table of contentsA1 Introduction to the 8th Annual Conference on the Science of Dissemination and Implementation: Optimizing Personal and Population HealthDavid Chambers, Lisa SimpsonD1 Discussion forum: Population health D&I researchFelicia Hill-BriggsD2 Discussion forum: Global health D&I researchGila Neta, Cynthia VinsonD3 Discussion forum: Precision medicine and D&I researchDavid ChambersS1 Predictors of community therapists’ use of therapy techniques in a large public mental health systemRinad Beidas, Steven Marcus, Gregory Aarons, Kimberly Hoagwood, Sonja Schoenwald, Arthur Evans, Matthew Hurford, Ronnie Rubin, Trevor Hadley, Frances Barg, Lucia Walsh, Danielle Adams, David MandellS2 Implementing brief cognitive behavioral therapy (CBT) in primary care: Clinicians' experiences from the fieldLindsey Martin, Joseph Mignogna, Juliette Mott, Natalie Hundt, Michael Kauth, Mark Kunik, Aanand Naik, Jeffrey CullyS3 Clinician competence: Natural variation, factors affecting, and effect on patient outcomesAlan McGuire, Dominique White, Tom Bartholomew, John McGrew, Lauren Luther, Angie Rollins, Michelle SalyersS4 Exploring the multifaceted nature of sustainability in community-based prevention: A mixed-method approachBrittany Cooper, Angie FunaioleS5 Theory informed behavioral health integration in primary care: Mixed methods evaluation of the implementation of routine depression and alcohol screening and assessmentJulie Richards, Amy Lee, Gwen Lapham, Ryan Caldeiro, Paula Lozano, Tory Gildred, Carol Achtmeyer, Evette Ludman, Megan Addis, Larry Marx, Katharine BradleyS6 Enhancing the evidence for specialty mental health probation through a hybrid efficacy and implementation studyTonya VanDeinse, Amy Blank Wilson, Burgin Stacey, Byron Powell, Alicia Bunger, Gary CuddebackS7 Personalizing evidence-based child mental health care within a fiscally mandated policy reformMiya Barnett, Nicole Stadnick, Lauren Brookman-Frazee, Anna LauS8 Leveraging an existing resource for technical assistance: Community-based supervisors in public mental healthShannon Dorsey, Michael PullmannS9 SBIRT implementation for adolescents in urban federally qualified health centers: Implementation outcomesShannon Mitchell, Robert Schwartz, Arethusa Kirk, Kristi Dusek, Marla Oros, Colleen Hosler, Jan Gryczynski, Carolina Barbosa, Laura Dunlap, David Lounsbury, Kevin O'Grady, Barry BrownS10 PANEL: Tailoring Implementation Strategies to Context - Expert recommendations for tailoring strategies to contextLaura Damschroder, Thomas Waltz, Byron PowellS11 PANEL: Tailoring Implementation Strategies to Context - Extreme facilitation: Helping challenged healthcare settings implement complex programsMona RitchieS12 PANEL: Tailoring Implementation Strategies to Context - Using menu-based choice tasks to obtain expert recommendations for implementing three high-priority practices in the VAThomas WaltzS13 PANEL: The Use of Technology to Improve Efficient Monitoring of Implementation of Evidence-based Programs - Siri, rate my therapist: Using technology to automa...
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.