Abstract
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.
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Supplementary Material
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