Disclosure of Amyloid PET results to Cognitively Impaired and Unimpaired Participants Enrolled in Alzheimer’s Disease Research Studies

Abstract

AbstractBackgroundPrior studies have demonstrated the safety of amyloid PET scan disclosure to research participants. However, existing research has been conducted in predominantly white, cognitively intact, and highly educated samples. The Wake Forest Alzheimer’s Disease Research Center (ADRC) implemented a protocol to provide amyloid PET disclosure to a diverse cohort of participants with and without cognitive impairment.MethodEligible participants who complete an amyloid PET scan at the Wake Forest ADRC may consent to receive amyloid PET scan results. Prior to consent, participants are informed of possible results (elevated/not elevated) and how these results are related to Alzheimer’s disease (AD) risk. The disclosure process involves three phases: 1) pre‐disclosure assessment of anxiety and depression, 2) feedback session with a trained clinician, and 3) post‐disclosure completion of the Impact of Events Scale (IES). Additionally, a qualitative survey was developed to collect participant feedback following the disclosure session.Results170 participants (CN = 103, MCI = 48, dementia = 17, other = 2) have received amyloid disclosure; age: 70.5 (7.9); education: 15.7 (2.7); 62% female; 87% white). There was a statistically significant difference in IES scores between CN/MCI participants (CN = 4.3(7.2), MCI = 8.6(10.7), t(165) = 2.8, p = 0.005). There was no significant difference between IES scores in other cognitive pairs (CN‐Dementia = t(165) = 1.5, p = 0.134, MCI‐Dementia = t(165) = 0.36, p = 0.729).Post‐disclosure feedback surveys were completed by 41 participants (age = 71.7 (6.7) years, education = 15.9 (2.4) years, 63% female, 83% white) who reported (1 = strongly disagree, 5 = strongly agree) that receiving their results was a positive (M = 4.6 (0.6)) and informative (M = 4.78 (0.47)) experience, and given what they now know, they would chose to receive their results again (M = 4.58 (0.87)). There were no significant differences in responses between cognitive groups. Participants also reported that knowledge of their PET results will impact their future thoughts, feelings, and behaviors (M = 4.00 (1.02)).ConclusionAmyloid disclosure is safe and well tolerated by a diverse cohort, though participants with MCI reported higher IES scores post‐disclosure. Participants reported positive experiences on a feedback questionnaire and would choose to receive results again.