Factors Affecting Recall of Different Types of Personal Genetic Information about Alzheimer's Disease Risk: The REVEAL Study

Abstract

Methods: Data were obtained through a multisite clinical trial in which different types of genetic risk-related information were disclosed to individuals (n = 246) seeking a risk assessment for Alzheimer's disease. Results: Six weeks after disclosure, 83% of participants correctly recalled the number of risk-increasing APOE alleles they possessed, and 74% correctly recalled their APOE genotype. While 84% of participants recalled their lifetime risk estimate to within 5 percentage points, only 51% correctly recalled their lifetime risk estimate exactly. Correct recall of the number of APOE risk-increasing alleles was independently associated with higher education (p < 0.001), greater numeracy (p < 0.05) and stronger family history of Alzheimer's disease (p < 0.05). Before adjustments for confounding, correct recall of APOE genotype was also associated with higher education, greater numeracy and stronger family history of Alzheimer's disease, as well as with higher comfort with numbers and European American ethnicity (all p < 0.05). Correct recall of the lifetime risk estimate was independently associated only with younger age (p < 0.05). Conclusions: Recall of genotype-specific information is high, but recall of exact risk estimates is lower. Incorrect recall of numeric risk may lead to distortions in understanding risk. Further research is needed to determine how best to communicate different types of genetic risk information to patients, particularly to those with lower educational levels and lower numeracy. Health-care professionals should be aware that each type of genetic risk information may be differentially interpreted and retained by patients and that some patient subgroups may have more problems with recall than others.

Knowledge assessment and psychological impact of genetic counseling in people at risk for familial FTD

“…In general, follow‐up interviews with individuals after a counseling session would be important to include in genetic studies to ensure that knowledge and understanding gained from the session is maintained. As seen in the Risk Evaluation and Education for Alzheimer's Disease study, 23 cognitively normal adults can demonstrate variable longer‐term retention of information learned from a genetic and psychoeducation session, leaving open the possibility of recalling inaccurate information and impacting predictive testing, decision‐making, and life planning.…”

“…In general, follow-up interviews with individuals after a counseling session would be important to include in genetic studies to ensure that knowledge and understanding gained from the session is maintained. As seen in the Risk Evaluation and Education for Alzheimer's Disease study, 23…”

A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone

“…Risk estimate items asked participants to provide their lifetime and remaining risk percentages and were considered correct if responses were within 5% of communicated results, as used in prior analyses. 20 – 22 Item prompts encouraged participants to provide their best guess if they did not remember their estimate. An additional open-ended item asked, “What other disease did we tell you is associated with the APOE gene?”, but is analyzed separately from other recall items because it was administered only to participants randomized to AD+CAD disclosure.…”

“…Additional analyses were conducted to compare arms in APOE ε4-positive and APOE ε4-negative participants, as well as to further adjust for age, gender, education, race, family history of AD, AD+CAD or AD-only information disclosure, numeracy and self-reported comfort in analyses of information recall. 20 We also conducted analyses where missing data were not imputed to minimize potential biases in non-inferiority analyses. 34 These adjusted analyses and available case analyses are omitted from this report, because unadjusted models using imputed data were considered conservative in comparison (i.e., we report non-inferiority only when it was demonstrated in all analyses).…”

“…Previous analyses have shown that testing does not increase risks for psychological harm, even among individuals who are ε4-positive; 17 – 19 and that the majority of participants accurately recall test results. 20 – 22 Here, we report on the third REVEAL Study trial, hypothesizing that mean scores on a variety of patient outcomes would be no worse following telephone disclosure than following in-person disclosure.…”