F3-01-01: Disclosure of APOE genotype to persons with mild cognitive impairment (MCI)

We generated risk estimates using data obtained from a clinical trial involving 769 aMCI patients, which provided three-year conversion data stratified by APOE genotype (Petersen et al. 2005). We used an evidence-based approach in risk communication to develop graphics and language to communicate APOE genotype and a numerical risk estimate. Patients with aMCI are being recruited at four university medical centers (Harvard, Univ Michigan, Univ Penn and Howard) and randomized in a 2:1 ratio to either disclosure or non-disclosure arms. Scales of participant and caregiver distress, health behavior change and insurance/lifestyle change are measured at 6 weeks and 6 months. Three-year risks for each age-group were: 8.4% for APOE-ε4 negative and 42.0% for APOE-ε4 positive individuals (ages 55-70), 20.5% for APOE-ε4 negative and 47.4% for APOE-ε4 positive (ages 71-77), and 30.7% for APOE-ε4 negative and 57.1% for APOE-ε4 positive (age 78 or older). Estimates based on MCI diagnosis and age alone (excluding genotype information) were 25.2% (ages 55-70), 34.0% (ages 71-77) and 43.9% (ages 78 or older). Educational materials were created to describe the possible APOE genotypes, an individual's APOE genotype result and three-year AD conversion risk. An evidence based procedure for risk estimation and an experimental trial of APOE genotype disclosure in aMCI patients has been designed and implemented. Preliminary results will be presented and discussed.