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Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time
Heleen M A Hendriksen1,2, Tanja J de Rijke3,4, Agnetha Fruijtier1,2,3,4
1Alzheimer Center Amsterdam, Department of Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Amyloid PET scans in subjective cognitive decline (SCD) were well-received, with participants reporting satisfaction and low regret. Amyloid-positive individuals later expressed a greater need for information, highlighting the importance of follow-up care.
Area of Science:
- Neurology
- Medical Imaging
- Patient Experience Research
Background:
- Subjective cognitive decline (SCD) affects individuals experiencing cognitive changes without objective impairment.
- Amyloid positron emission tomography (PET) is a diagnostic tool used to detect amyloid plaques in the brain.
- Understanding patient responses to amyloid PET disclosure is crucial for managing cognitive health.
Purpose of the Study:
- To evaluate patient experiences and outcomes following amyloid PET disclosure in individuals with SCD.
- To assess satisfaction, information needs, decision regret, and emotional responses over a 6-month period.
- To determine if amyloid status influences patient experiences after disclosure.
Main Methods:
- Fifty-seven participants with SCD underwent amyloid PET scans.
- Patient-reported outcomes were collected via questionnaires at baseline, 1 day post-disclosure, and 6 months post-disclosure.
- Data analysis compared outcomes between amyloid-positive (A+) and amyloid-negative (A-) participants.
Main Results:
- Participants reported high satisfaction with the consultation and information provided, irrespective of amyloid status.
- Amyloid-positive participants showed a significantly higher need for information at 6 months compared to amyloid-negative participants (45% vs. 12%).
- Low levels of decision regret and negative emotions (anxiety, uncertainty) were observed in all participants.
Conclusions:
- Amyloid PET disclosure is positively valued by individuals with SCD, regardless of their amyloid status.
- The increased information needs in amyloid-positive individuals underscore the necessity of ongoing support and follow-up.
- Amyloid PET disclosure can be integrated into clinical practice for SCD without causing significant distress.
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