Yue Guan1, Debra L Roter2, Lori H Erby3, Jennifer L Wolff4, Laura N Gitlin5, J Scott Roberts6, Robert C Green7, Kurt D Christensen8. 1. Department of Medicine, University of Maryland School of Medicine, Baltimore, MD, USA. Electronic address: yguan@medicine.umaryland.edu. 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; Harvard Medical School, Boston, MA, USA; Broad Institute of MIT and Harvard, Cambridge, MA, USA; Partners Personalized Medicine, Boston, MA, USA. 8. Division of Genetics, Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
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.
RCT Entities:
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.
Authors: Robert C Green; Kurt D Christensen; L Adrienne Cupples; Norman R Relkin; Peter J Whitehouse; Charmaine D M Royal; Thomas O Obisesan; Robert Cook-Deegan; Erin Linnenbringer; Melissa Barber Butson; Grace-Ann Fasaye; Elana Levinson; J Scott Roberts Journal: Alzheimers Dement Date: 2014-12-09 Impact factor: 21.566
Authors: Jeremy Sugarman; Debra Roter; Carole Cain; Roberta Wallace; Don Schmechel; Kathleen A Welsh-Bohmer Journal: J Am Geriatr Soc Date: 2007-04 Impact factor: 5.562
Authors: Kurt D Christensen; J Scott Roberts; Peter J Whitehouse; Charmaine D M Royal; Thomas O Obisesan; L Adrienne Cupples; Jacqueline A Vernarelli; Deepak L Bhatt; Erin Linnenbringer; Melissa B Butson; Grace-Ann Fasaye; Wendy R Uhlmann; Susan Hiraki; Na Wang; Robert Cook-Deegan; Robert C Green Journal: Ann Intern Med Date: 2016-01-26 Impact factor: 25.391
Authors: Yue Guan; Debra L Roter; Lori H Erby; Jennifer L Wolff; Laura N Gitlin; J Scott Roberts; Robert C Green; Kurt D Christensen Journal: J Health Commun Date: 2018
Authors: Justin P Ma; Cason B Robbins; Jia Min Lee; Srinath Soundararajan; Sandra S Stinnett; Rupesh Agrawal; Brenda L Plassman; Eleonora M Lad; Heather Whitson; Dilraj S Grewal; Sharon Fekrat Journal: Ophthalmol Retina Date: 2022-03-11
Authors: Nidhi Marulappa; Natalie N Anderson; Jennifer Bethell; Anne Bourbonnais; Fiona Kelly; Josephine McMurray; Heather L Rogers; Isabelle Vedel; Anna R Gagliardi Journal: BMC Health Serv Res Date: 2022-04-22 Impact factor: 2.908
Authors: Kurt D Christensen; Jason Karlawish; J Scott Roberts; Wendy R Uhlmann; Kristin Harkins; Elisabeth M Wood; Thomas O Obisesan; Lan Q Le; L Adrienne Cupples; Emilie S Zoltick; Megan S Johnson; Margaret K Bradbury; Leo B Waterston; Clara A Chen; Sara Feldman; Denise L Perry; Robert C Green Journal: Alzheimers Dement (N Y) Date: 2020-03-22