@article{c86d03bc1780445caa1de101667581da,
title = "Disclosing genetic risk of Alzheimer's disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study",
abstract = "Objective To describe the impact of genetic information on Alzheimer's disease (AD) risk communication to patients with mild cognitive impairment (MCI) and their visit companions. Methods Participants of the fourth REVEAL Study trial were randomized to receive AD risk assessments with or without genotype results. We coded 79 audio recorded risk disclosure sessions with the Roter Interaction Analysis System. Multilevel analyses explored differences in communication when disclosed risks were based on age and MCI diagnosis alone or in addition to APOE genotype status. Results The addition of genotype results diminished the patient-centered nature of the sessions (p < 0.001). When ε4 positive relative to ε4 negative results were disclosed, visit companions were more verbally active (p < 0.05), disclosed more medical information (p < 0.05), were more positive verbally and non-verbally (p < 0.05) and were more proactive in setting the visit agenda (p < 0.05). Conclusions Delivery of complex genetic risk information reduces the patient-centeredness of disclosure sessions. Visit companions are more actively engaged in session communication when patients are at increased genetic risk for AD. Practice implications AD risk discussions can be improved by supporting the positive role of visit companions and addressing the challenges inherent in the delivery of complex genetic information in a patient-centered manner.",
keywords = "Alzheimer's disease, Cognitive impairment, Genetic counseling, Genetic testing, Patient-centeredness, Patient–provider communication, Visit companion",
author = "Yue Guan and Roter, {Debra L.} and Erby, {Lori H.} and Wolff, {Jennifer L.} and Gitlin, {Laura N.} and Roberts, {J. Scott} and Green, {Robert C.} and Christensen, {Kurt D.}",
note = "Funding Information: This work was supported by NIH grants HG002213, HG006500, HD077671, AG013846, RR000533, RR010284, and TR001102. Additional members of the REVEAL Study Group are Deborah Blacker, Massachusetts General Hospital/Harvard Medical School and Harvard School of Public Health, Boston, Massachusetts; Melissa Butson, Case Western Reserve University, Cleveland, Ohio; Clara Chen, Boston University School of Public Health, Boston, Massachusetts; Robert Cook-Deegan, Sanford School of Public Policy, Durham, North Carolina; Elana Cox, Weill Cornell Medical College, New York, New York; L. Adrienne Cupples, Boston University School of Public Health, Boston, Massachusetts; Jessica Davis, Weill Cornell Medical College, New York, New York; Lindsay Farrer, Boston University School of Medicine and Boston University School of Public Health, Boston, Massachusetts; Grace-Ann Fasaye, Walter Reed National Military Medical Center, Bethesda, Maryland; Patrick Griffith, Morehouse School of Medicine, Atlanta, Georgia; Kristin Harkins, Perelman School of Medicine, Philadelphia, Pennsylvania; Susan Hiraki, GeneDX, Gaithersburg, Maryland; Megan Johnson, Howard University, Washington, DC; Stephanie Johnson, Howard University, Washington, DC; Jason Karlawish, Perelman School of Medicine, Philadelphia, Pennsylvania; Denise Perry, Brigham and Women's Hospital, Boston, Massachusetts; Lan Le, University of Michigan School of Public Health, Ann Arbor, Michigan; Elana Levison, Division of Genetics, New York Presbyterian Hospital, New York, New York; Natalie Bartnik, University of Michigan School of Public Health, Ann Arbor, Michigan); Erin Linnenbringer, Washington University School of Medicine, St. Louis, Missouri; Elisabeth McCarty Wood, Perelman School of Medicine, Philadelphia, Pennsylvania; Thomas Obisesan, Howard University Hospital, Washington, DC; Stephen Post, Stony Brook University, Stony Brook, New York; Kimberly Quaid, Indiana University School of Medicine, Indianapolis, Indiana; Lisa Ravdin, Weill Cornell Medical College, New York, New York; Norman Relkin, Weill Medical College of Cornell University, New York, New York; Charmaine Royal, Duke University, Durham, North Carolina; Robert Stern, Boston University School of Medicine, Boston, Massachusetts; A. Dessa Sadovnick, University of British Columbia, Vancouver, British Columbia; Susan Sami, Case Western Reserve University, Cleveland, Ohio; Pamela Sankar, Perelman School of Medicine, Philadelphia, Pennsylvania; Wendy Uhlmann, University of Michigan Medical School, Ann Arbor, Michigan; Leo Waterston, Brigham and Women's Hospital, Boston, Massachusetts; Peter Whitehouse, Case Western Reserve University, Cleveland, Ohio; and Lori Wright, Medical College of Georgia, Athens, Georgia. Publisher Copyright: {\textcopyright} 2016 Elsevier Ireland Ltd Copyright: Copyright 2017 Elsevier B.V., All rights reserved.",
year = "2017",
month = may,
doi = "10.1016/j.pec.2016.12.005",
language = "English (US)",
volume = "100",
pages = "927--935",
journal = "Patient Education and Counseling",
issn = "0738-3991",
publisher = "Elsevier Ireland Ltd",
number = "5",
}