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

PATIENT EDUCATION AND COUNSELING

卷:100

Article

Guan, Yue¹  Roter, Debra L.²  Erby, Lori H.³  Wolff, Jennifer L.⁴  Gitlin, Laura N.⁵  Roberts, J. Scott⁶  Green, Robert C.^7,8,9,10  Christensen, Kurt D.^7,8 

[1] Univ Maryland, Sch Med, Dept Med, Baltimore, MD 21201 USA

[2] Johns Hopkins Bloomberg Sch Publ Hlth, Dept Hlth Behav & Soc, Baltimore, MD USA

[3] NHGRI, Social & Behav Res Branch, NIH, Bethesda, MD 20892 USA

[4] Johns Hopkins Bloomberg Sch Publ Hlth, Dept Hlth Policy & Management, Baltimore, MD USA

[5] Johns Hopkins Sch Nursing, Dept Community Publ Hlth, Baltimore, MD USA

[6] Univ Michigan, Sch Publ Hlth, Dept Hlth Behav & Hlth Educ, Ann Arbor, MI 48109 USA

[7] Brigham & Womens Hosp, Dept Med, Div Genet, 75 Francis St, Boston, MA 02115 USA

[8] Harvard Med Sch, Boston, MA USA

[9] Broad Inst MIT & Harvard, Cambridge, MA USA

[10] Partners Personalized Med, Boston, MA USA

关键词: Alzheimer's disease;    Cognitive impairment;    Genetic testing;    Genetic counseling;    Patient-provider communication;    Patient-centeredness;    Visit companion;   

DOI  :  10.1016/j.pec.2016.12.005

来源: Elsevier

【 摘 要 】

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 e4 positive relative to e4 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. (C) 2016 Elsevier Ireland Ltd. All rights reserved.

【 授权许可】

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