Leslie Riddle1, Laura M Amendola2, Marian J Gilmore3, Claudia Guerra4, Barbara Biesecker5, Tia L Kauffman3, Katherine Anderson6, Alan F Rope3, Michael C Leo7, Mikaella Caruncho1, Gail P Jarvik2, Benjamin Wilfond8, Katrina A B Goddard3, Galen Joseph1. 1. Department of Humanities and Social Sciences, University of California, San Francisco, 1450 3rd St., San Francisco, CA 94158, USA. 2. Division of Medical Genetics, Department of Medicine, University of Washington Medical Center, 1705 NE Pacific St. Box 357720, Seattle, WA 98195, USA. 3. Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA. 4. Department of General Internal Medicine, University of California, San Francisco, 1450 3rd St. Box 0128, San Francisco, CA 94158, USA. 5. RTI International, 701 13th St. NW, Washington, D.C., 20005, USA. 6. Denver Health and Hospital Authority, MC 3150, 777 Bannock, Denver, CO 80204, USA. 7. Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA. 8. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, M/S JMB-6, 1900 Ninth Ave., Seattle, WA 98101, USA.
Abstract
OBJECTIVE: To describe the training and early implementation of the ARIA model of genetic counseling (Accessible, Relational, Inclusive, Actionable). METHODS: As part of the Cancer Health Assessments Reaching Many (CHARM) study, an interdisciplinary workgroup developed the ARIA curriculum and trained genetic counselors to return exome sequencing results using the ARIA model. CURRICULUM: The ARIA curriculum includes didactic elements, discussion, readings, role plays, and observations of usual care genetic counseling sessions. The ARIA model provides the skills and strategies needed for genetic counseling to be accessible to all patients, regardless of prior knowledge or literacy level; involves appropriate psychological and social counseling without overwhelming the patient with information; and leaves the patient with clear and actionable next steps. CONCLUSION: With sufficient training and practice, the ARIA model appears to be feasible, with promise for ensuring that genetic counselors' communication is accessible, relational, inclusive and actionable for the diverse patients participating in genomic medicine. PRACTICE IMPLICATIONS: ARIA offers a coherent set of principles and strategies for effective communication with patients of all literacy levels and outlines specific techniques to practice and incorporate these skills into routine practice. The ARIA model could be integrated into genetic counseling training programs and practice, making genetic counseling more accessible and meaningful for all patients.
OBJECTIVE: To describe the training and early implementation of the ARIA model of genetic counseling (Accessible, Relational, Inclusive, Actionable). METHODS: As part of the Cancer Health Assessments Reaching Many (CHARM) study, an interdisciplinary workgroup developed the ARIA curriculum and trained genetic counselors to return exome sequencing results using the ARIA model. CURRICULUM: The ARIA curriculum includes didactic elements, discussion, readings, role plays, and observations of usual care genetic counseling sessions. The ARIA model provides the skills and strategies needed for genetic counseling to be accessible to all patients, regardless of prior knowledge or literacy level; involves appropriate psychological and social counseling without overwhelming the patient with information; and leaves the patient with clear and actionable next steps. CONCLUSION: With sufficient training and practice, the ARIA model appears to be feasible, with promise for ensuring that genetic counselors' communication is accessible, relational, inclusive and actionable for the diverse patients participating in genomic medicine. PRACTICE IMPLICATIONS: ARIA offers a coherent set of principles and strategies for effective communication with patients of all literacy levels and outlines specific techniques to practice and incorporate these skills into routine practice. The ARIA model could be integrated into genetic counseling training programs and practice, making genetic counseling more accessible and meaningful for all patients.
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