All federally-funded Alzheimer’s Disease Research Centers (ADRCs) conduct annual evaluations (including cognitive testing using the National Alzheimer’s Coordinating Center Uniform Data Set version 3 and medical/neurologic examination) with healthy and impaired older adults enrolled in their respective longitudinal cohorts (LC). These data are used to generate research ‘diagnoses,’ track symptom progression over time, and determine eligibility for affiliated research studies. Although the return of individual research results is increasingly common across the ADRC network, no standardized protocol exists for neuropsychological feedback with participant populations. Furthermore, few studies investigate the impact of results disclosure. We aimed to evaluate the (a) efficacy, (b) acceptability, (c) safety, and (d) utility of a pilot neuropsychological feedback program at the Michigan ADRC.

All Michigan ADRC’s LC participants are offered feedback with a study clinician following completion of evaluations and diagnostic determination. Participants were highly interested: >99% agree to receive results. Our study includes a subset of 68 participants (cognitively healthy=45; impaired not mild cognitive impairment [MCI]=1, MCI=13; dementia=2) who consented to complete program evaluation surveys (age= 71.54 ±5.11). We administered surveys immediately following feedback (n = 61), 1 week later (n = 59) and 4 months later (n = 35). We evaluated feedback efficacy through measures of comprehension/recall of individual results (e.g., identified impaired cognitive domains, research diagnosis) immediately and at both follow up time-points. We assessed feedback acceptability through a satisfaction questionnaire administered one-week post-feedback. Feedback safety was measured through assessment of emotional symptoms (Geriatric Depression Scale [GDS-15]; Positive and Negative Affect Scale [PANAS]) administered at both follow-ups. Feedback utility was measured using a health behavior change questionnaire administered 4 months post-feedback.

Comprehension and retention of individual results over time was robust (i.e., 95-96% of results correctly recalled across all time points). Participants were highly satisfied with the return of results process (M=4.68±0.73 on a Likert scale from 1=Very Dissatisfied; 5=Very Satisfied). No adverse events were reported, and no participants endorsed clinically significant depression on the GDS-15 (1-week: M=0.84±1.23; 4-month: M=0.56±0.82). Furthermore, stable, low negative affect was reported on the PANAS (1 week: M=10.00±3.93; 4-month: M=10.00+3.36). Participants endorsed a range of health behavior changes following feedback including sharing results with family or a medical provider, improving diet and exercise, or enrolling in new research studies.

High comprehension and retention scores suggest that our brief, standardized approach to feedback is efficacious, even among participants with cognitive difficulties. Consistent with prior studies, our findings suggest that return of individualized cognitive results is safe. Moreover, our results provide preliminary evidence that results disclosure may have a positive impact on health behaviors (e.g., sharing cognitive test results with family/friends or a physician), though future research is needed to better understand how these adaptive responses can be maximized for clinically and ethnoracially diverse older adults. Finally, strong satisfaction with the return of results pilot program is expected to favorably impact retention in the longitudinal cohort. Furthermore, widespread integration of feedback may serve as a tool for representative and inclusive recruitment at ADRCs.