Pilot feasibility, acceptability, and tolerability of researcher-delivered apolipoprotein E (
                    <i>APOE</i>
                    ) disclosure via videoconferencing in Australian adults at-risk of dementia

doi:10.1177/13872877261459068

DOI: 10.1177/13872877261459068 ISSN: 1387-2877

Pilot feasibility, acceptability, and tolerability of researcher-delivered apolipoprotein E ( APOE ) disclosure via videoconferencing in Australian adults at-risk of dementia

Emily Rosenich, Simran Chauhan, Ruby Haeusler, Mirette Keriakes, Hannah Cummins, Hannah Olver, Lisa Bransby, Paul Maruff, Yen Ying Lim

Show PDF Cite

Background

In Australia, access to Alzheimer's disease (AD) therapeutics requires apolipoprotein E ( APOE ) genotype testing and disclosure, yet the feasibility, acceptability and tolerability of APOE disclosure in an Australian context remains unknown.

Objective

This pilot study evaluated a researcher-delivered, videoconferencing-based APOE disclosure protocol in cognitively unimpaired (CU) Australian adults with dementia family history.

Methods

The DISCLOSE- APOE protocol, informed by prior expert approaches and Australian consumer preferences, was piloted in fifteen CU adults aged 40–70 (8 ε4 carriers, 7 non-carriers). The protocol comprised 7 online sessions, including mood/suicide risk assessment, education, and psychological readiness evaluation. APOE genotype was disclosed 1:1 via videoconferencing using a standardized interaction procedure. Existing data and online questionnaires assessed participant characteristics and outcomes pre- and post-disclosure. Paired-samples t-tests examined within-group mood changes, and independent-samples t-tests compared post-disclosure test-/event-related distress between carriers and non-carriers.

Results

All participants (M age = 60.8 (±6.4), 60% female) completed the pilot, and no adverse events occurred. Baseline mood was equivalent across groups. Anxiety decreased post-disclosure in both ε4 carriers and non-carriers. Depressive symptoms increased slightly but not significantly in ε4 carriers and remained sub-threshold. Test-related distress was moderately higher in ε4 carriers post-disclosure.

Conclusions

Researcher-delivered and remote APOE disclosure via videoconferencing resulted in no attrition nor clinically-significant short-term psychological distress, with pilot data providing preliminary evidence of feasibility, acceptability and tolerability in this cohort. Findings will inform the development and implementation of culturally-appropriate and scalable APOE disclosure protocols in research and clinical settings to facilitate delivery of anti-Aβ therapies in Australia.