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Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study
Journal article   Open access   Peer reviewed

Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study

Yue Guan, Debra L. Roter, Lori H. Erby, Jennifer L. Wolff, Laura N. Gitlin, J. Scott Roberts, Robert C. Green and Kurt D. Christensen
Patient education and counseling, v 100(5), pp 927-935
May 2017
PMID: 28012682
url
https://europepmc.org/articles/pmc5400683View
Accepted (AM)Open Access (License Unspecified) Open

Abstract

Alzheimer’s disease Cognitive impairment Genetic counseling Genetic testing Patient-centeredness Patient–provider communication Visit companion
•Alzheimer’s disease risk discussion for cognitively impaired patients was examined.•These disclosures (APOE genotype included or not) display a psychosocial orientation.•Risk disclosures are less patient-centered when genetic findings are included.•Visit companions were more participatory when patients were ε4-positive. 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. 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. 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). 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. 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.

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Collaboration types
Domestic collaboration
Web of Science research areas
Public, Environmental & Occupational Health
Social Sciences, Interdisciplinary
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