Patient and representative experience after amyloid PET/CT in a real-world memory clinic: a mixed-methods observational study

BACKGROUND: Amyloid PET/CT is increasingly used in the diagnostic evaluation of cognitive disorders; however, its real-world impact on patient and caregiver experiences remains insufficiently characterised. This study examined how amyloid PET results influence perceived diagnosis, emotional responses, behavioural adaptations, and daily life organisation. METHODS: We conducted a retrospective-prospective monocentric mixed-methods study integrating clinical data from the CLEMENS registry, routine amyloid PET interpretations, and a structured telephone survey that included open-ended questions. Adults who underwent amyloid PET between 2015 and 2024 were contacted, and therapeutic representatives were interviewed when patients were unable to participate. Quantitative outcomes were compared between PET-positive and PET-negative individuals using Fisher's exact and nonparametric tests. Qualitative responses were analysed thematically and integrated with quantitative findings. RESULTS: Twenty-one individuals completed the survey (12 PET-positive and 9 PET-negative individuals). PET-positive individuals were slightly older (72.4 vs. 68.9 years) and had lower MoCA scores (19.4 vs. 22.2) than PET-negative individuals. They exhibited major neurocognitive disorders (5/12 vs. 1/9) and behavioural adaptations (73% vs. 33%) more frequently. Emotional responses differed markedly by PET status: depressive mood (64% vs. 12.5%; p = 0.059) and shock/distress (42% vs. 22%) were more frequent among PET-positive individuals, whereas relief was more common among PET-negative individuals (50% vs. 18%). Qualitative themes indicated that PET-positive results were perceived as turning points associated with loss of autonomy and future uncertainty, while PET-negative results commonly provided reassurance and stability. CONCLUSION: Amyloid PET/CT influences not only diagnostic understanding but also the emotional, behavioural, and practical experiences of patients and representatives. PET-positive results are associated with a greater psychosocial burden, whereas PET-negative results provide reassurance. As amyloid PET becomes central to diagnostic and therapeutic pathways, patient-centred communication and supportive counselling will be essential.