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

Patient Educ Couns. 2017 May;100(5):927-935. doi: 10.1016/j.pec.2016.12.005. Epub 2016 Dec 14.


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.

Publication types

  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Alzheimer Disease / genetics*
  • Cognitive Dysfunction*
  • Communication*
  • Female
  • Genetic Counseling*
  • Genetic Predisposition to Disease
  • Humans
  • Male
  • Middle Aged
  • Office Visits
  • Patient-Centered Care
  • Physician-Patient Relations*
  • Professional-Patient Relations
  • Proxy*
  • Truth Disclosure*