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 and 5 others
PMID 28012682WHAT IT FOUND
Disclosing genetic risk made consultations less patient-centered, with counselors giving more biomedical facts and less emotional support.
However, family companions became more verbally active and supportive when the patient carried the high-risk gene, helping to process the news.
Key findings
01Sessions without genotype disclosure were more patient-centered than those including it, with counselors using more psychosocial and facilitative statements.
02When patients received high-risk genetic results, their visit companions became more verbally active, disclosed more medical information, and showed more positive affect.
03Patients receiving high-risk results were rated as having more non-verbal negative affect, indicating distress and anxiety.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was small (79 patients) and homogeneous, with 96% Caucasian patients and only three female genetic counselors. Participants were self-referred and well-educated, which may not represent the broader population. Some participants were excluded due to technical recording issues or not being seen by a genetic counselor, and these excluded individuals differed slightly from those analysed. The study took place in a research context with standardized slides, which may differ from routine clinical practice.
Declared interests
Research support from N.I.H., Extramural. No other conflicts declared in the provided text.
The easy way to misread this
Do not conclude that genetic disclosure harms patient outcomes or engagement. The study found that companions became more active and supportive in high-risk cases, suggesting the family unit adapts to the news. The reduction in patient-centeredness reflects a shift in communication style, not necessarily a negative clinical impact on the patient's understanding or well-being.