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Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study
Institution:1. Department of Medicine, University of Maryland School of Medicine, Baltimore, MD, USA;2. Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA;3. Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA;4. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA;5. Department of Community-Public Health, Johns Hopkins School of Nursing, Baltimore, MD, USA;6. Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA;7. Division of Genetics, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA;8. Harvard Medical School, Boston, MA, USA;9. Broad Institute of MIT and Harvard, Cambridge, MA, USA;10. Partners Personalized Medicine, Boston, MA, USA;1. Department of Public Health & Preventive Medicine, SUNY Upstate Medical University, Syracuse, USA;2. Department of Urology, SUNY Upstate Medical University, Syracuse, USA;3. Section of Urology, Geisel School of Medicine at Dartmouth, Lebanon, USA;4. Urology of Virginia, Eastern Virginia Medical School, Virginia Beach, USA;1. Department of Psychology, Stellenbosch University, Stellenbosch, Private Bag X1, Matieland, 7602, South Africa;2. Alan J. Flisher Centre for Public Mental Health, Department of Psychology, Stellenbosch University, Stellenbosch, Private Bag X1, Matieland, 7602, South Africa;1. Department of Psychiatry, University of North Carolina, 170 Manning Drive, CB 7305, Chapel Hill, NC 27599, USA;2. Lineberger Comprehensive Cancer Center Biostatistics Core Facility, University of North Carolina, 450 West Drive, Chapel Hill, NC 27514, USA;3. H. W. Odum Institute for Research in Social Science, University of North Carolina at Chapel Hill, 208 N. Raleigh St., CB3355, Chapel Hill, NC 27599, USA;4. School of Medicine, University of North Carolina, 321 S. Columbia St., Chapel Hill, NC 27516, USA;5. Department of Medicine, University of North Carolina, 125 MacNider Hall, CB7005, Chapel Hill NC 27599, USA;1. School of Nursing, Trinity Western University, 7600 Glover Road, Langley, BC, V2Y 1Y1, Canada;2. Centre for Health Evaluation and Outcome Sciences, Providence Health Care Research Institute, 588-1081 Burrard Street, St. Paul’s Hospital, Vancouver, BC, V6Z 1Y6, Canada;3. School of Nursing, University of Victoria, P.O. Box 1700 STN CSC, Victoria, BC, V8W 2Y2, Canada;4. Department of Health Studies, Faculty of Social Sciences, University of Stavanger, 4036 Stavanger, Norway;5. University of Gothenburg Centre for Person-Centred Care, P.O. Box 457, SE-40539 Gothenburg, Sweden;6. Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, P.O. Box 457, SES-49539 Gothenburg, Sweden;7. Department of Colorectal Surgery, Sahlgrenska University Hospital/East, SE_41685 Gothenburg, Sweden;8. Department of Vascular Surgery, Sahlgrenska University Hospital, SE-41345 Gothenburg, Sweden
Abstract:ObjectiveTo describe the impact of genetic information on Alzheimer’s disease (AD) risk communication to patients with mild cognitive impairment (MCI) and their visit companions.MethodsParticipants 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.ResultsThe 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).ConclusionsDelivery 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 implicationsAD 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 testing  Genetic counseling  Patient–provider communication  Patient-centeredness  Visit companion
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